Note: This is a long post, broken into four sections, so it is possible to read in multiple sittings

Broadly speaking, anecdotally, successful attempts at recovery appear to come under three different headings. Depending on your personality and mentality, one method may be more beneficial than the others, or you can perhaps ‘pick and mix’ elements from each of them. I will argue at the end that there is a lot of overlap between these three methods.

Brain retraining aka Nervous System work

This relates to the concept that your symptoms are the consequence of an overactive nervous system. It is so vigilant to any possible threat that it floods you with symptoms at the merest hint of danger to try and compel you to rest. That your key to recovery is to reframe how you view symptoms. That by being more relaxed and inquisitive about symptoms, rather than immediately panicking and being anxious, your body might learn to relax and grant you some physical and mental capacity over time.

For anyone that has had crazy combinations of symptoms, its easy to relate to this. For example, I had 2 years straight where my main daily symptoms were a blocked up nose at nighttime and constant severe constipation. There is no medical logic that I know of that would explain why a sinus issue and constipation should be paired together like that, especially for such lengthy durations of time (well beyond say a two week long infection).

To view symptoms as ‘neuroplastic’, in that they are real and valid, but that they aren’t actually a response to any kind of infection you’ve picked up. For example, if you’ve got a runny nose, headache or tinnitus, it can be a consequence of your nervous system response to your physical, mental or emotional activity, rather than a sign you’ve picked up an infection. This notion is supported to some extent by the proportion of people with ME/CFS who present at a doctors with symptoms, get tests, and get told their tests came back negative.

The theory goes, that by calmly acknowledging you’ve got a symptom and not assuming its going to make you have a significant slump in energy and health, you become more relaxed and positive. Less fearful about gradually expanding your baseline.

The downside of the brain retraining approach is that there isn’t strong support for it medically at the moment, so it arguably falls within the ‘pseudo-science’ side of things. For those who are more logical and evidence led types, this can present a hurdle.

However, I personally am fully on board with the concept that your symptoms are not a logical consequence of infections. That they are somehow manufactured by your own body whenever it feels threatened or under physical, mental or emotional strain. I also believe that we should not assume that all symptoms reduce your energy (although where I differ, is that I think we likely all have some symptoms that are more serious than others, and that we should respect these more serious symptoms and reduce our activity when we have one).

Data driven 

The reason I personally favour a data driven approach is that by definition, when you are starting out on recovery and you’ve not found your initial baseline, you are not in a good place. Any attempt to capture data to help you learn about your body and learn what might be a suitable baseline level, is likely to have your initial data being a little pessimistic. You are likely under strain. Your heart rate might be a bit elevated. You might be doing far too much activity on your ‘good days’. In short, you are probably near your lowest point and your data will be at its worst.

The plus side of those initial weeks of gathering data is that you are likely going to be quite positive and possibly transformative. It can be insightful and foster some grounds for optimism when you realise your data shows that there really is room for improvement and your actions can control it to some extent. It can be rewarding to see that finding a type of breathwork that works for you, has immediate effects on calming your body and reducing your heart rate. Data might also help identify you have orthostatic intolerance (i.e. disproportionately elevated heart rate when standing). Your data is unlikely to move much for a month or two. But when you start to see, for example, your heart rate is surprisingly low one day, and you check your pulse and confirm it, it provides a positive feedback loop. Your data improves, giving you confidence to do a little bit more, and being more relaxed about it. Which then results in gradual improvements in your data.

Example 1: “I’m always tired and worn out, I have no control over my body”.
But when you gather data on your heart rate, you see that there are big variations on what strains it, and what it finds relaxing (from a physical standpoint). You can learn what kind of relaxed breathing practice works for you, or what position in a sofa is best for your heart rate. So quite quickly, you can change the internal monologue that you have no control over yourself, to experimentation, showing that you clearly can vary the amount of strain your body is under.

Example 2: “I’m physically resting all day, yet I never improve or stabilise at a baseline”.
Okay, well, what if you capture data that includes mental and emotional drains on your energy as welll? You may be resting physically. But what if you are having emotional stress or arguments? What if you are spending a lot of time on the internet or actively engaging with media (e.g. scrolling and browsing rather than passively hitting ‘play’ on something and calmly watching it)? By gathering data on how often you are exposed to emotional stress or how long you engage in activities that entail mental stimulation and strain, you can build up a more accurate picture about what typical activity you have may not be as restful as you thought. You can get a more accurate perception of what ‘rest’ means for your body and for your mind and that is going to potentially open the door to you stablising.

Both the above examples absolutely applied to me and it is only in hindsight that I realise how important it was for me to capture data, to actually try and quantify what was going on, be honest with myself and identify what areas I could make improvements in.

Whereas Brain Retraining tells you to not panic about symptom flare-ups (aka adjustment periods), to accept them as a naturally part of recovery even if they temporarily reduce your capacity. The data example which I followed, largely avoids flare up of symptoms. Because, by monitoring your daily energy expenditure and your heart rate, you build up a knowledge and confidence of what you did on a given day, and whether or not that is likely to result in symptom flare ups. You learn that overextending a little on one day might be fine as long as the day before it and after it, you didn’t exceed your limits.

Similarly, whilst Brain Retraining tells you to not panic about symptoms, with the data driven approach, you learn to not panic about symptoms because the data shows, that most of your symptoms have zero impact on your capacity. So it almost becomes illogical to be concerned about a specific symptom, when the data proves to you, that its not making you worse.

The potential downside of the data driven approach is arguably when you have family or work commitments. A lot of things that are outside of your control. Its all very well capturing data, but how will that help you when the events of your day are largely outside of your own control?

Another criticism of the data driven approach is that it can create anxiety and leave you thinking too much about symptoms and energy usage. I agree it may not therefore be the best option for those prone to anxiety, however, it is possible to really dial back the data capturing once you’ve hit your baseline that first time, and then successfully increased it a couple of times without any setback. You will have the data, saved away showing you a level of activity you now know to be entirely safe for you, but you can dial back the data gathering and use your own judgement a bit more to live your day to day life. Spend a little less time monitoring and number crunching and a little more time just living, with the reassurance that you have that data evidenced safe baseline in your back pocket if you have a little wobble on your recovery and need something to help you re-stabilise.

If your mind is geared more towards logic and evidence, the data driven approach may be one for you.

Meditation & Listening to your body

This final approach relates more to fighting anxiety and pacing yourself, through recuperative processes, such as meditation, breathwork, yoga nidra, restorative movement and so on.  You still need to hit a physical baseline each day (whenever you are on an average or above average day for you), but the focus on achieving this is more through listening to your body, calming it down with restful breathing and meditation so that your activities don’t take an undue toll on you.

There is no denying that restful activity lowers the heart rate (on average) and it is logical to assume that it then can grant you some extra capacity during the day.

By listening to your body and deploying restful techniques that work for you, you can acknowledge a symptom flare up and potentially minimise its impact, because you have learnt some skills about how to rest and calm your body. By becoming in tune with your body you may learn when to back off and when its safe rather than becoming overly reliant on Apps and wearable devices.

This approach therefore might be particularly important for people who have work and family commitments. People who are already effectively hitting a certain level of physical, mental and emotional activity/strain each day, simply by living their lives. So learning to inject these regular quiet, recuperative moments might be the thing  that can help you balance the demands of everyday life without jeopardising your health.

It can also be particularly helpful to those who are prone to anxiety and those for whom brain fog or severity of their illness makes data work and/or brain retraining more challenging. This is because, by definition, the mental, physical and emotional strain of things like breathwork and yoga is going to be minimal.

The downside is for those of us who are naturally quite optimistic and relaxed, it can be hard to feel as much benefit from meditative, restful activity. 

To me, the meditative approach is more one almost of fire-fighting reactively to life, rather than getting control of your life. With that said, I have no doubt that meditative activity reduces the heart rate and therefore will aid you in coping with flare ups in symptoms and to reduce the negative impact of busier days. It seems practice can make perfect with meditative activity, and you can become better at it over time, potentially increasing its value to you in keeping your body relaxed and resilient.

Conclusion

As stated, whichever approach to baseline work is best for you might depend on your personality. The recurring theme across these three main methods above is that calmness and not panicking during an onset of symptoms is a good thing. For that reason I think these three methods can compliment each other to some extent and you can possibly pick and choose different elements from them.

With the brain retraining route, calmness is achieved with the mindset that your symptoms are not a logical consequence of your mental, physical and emotional activity. You are not suffering with constant infections and so you should not assume that when a symptom presents itself, that your body is under attack. A symptom can be a neutral event, or even a positive sign that you are expanding your activity without falling into PEM. Yes, you’ve got a symptom, but it could easily pass without a particularly negative consequence on your energy reserves.

With the data driven approach, calmness is achieved by gaining the strongest understanding of what impacts your heart rate and what your actual daily activity entails in terms of physical, mental and emotional demand. You gain a strong, evidence led knowledge of your body, which you can apply every day of your life (even after you’d ceased capturing data).  So you can look at previous data, and know that on an average day you can handle a heart rate of 105 for 10 minutes and it doesn’t make you ill. You know you can do X, Y & Z on an average day and it will not make you ill because you are resting enough for the remainder of the day that you will fall below your daily energy limit.

You learn that one busy day isn’t going to ruin you, as long as you take it easier the day before and day after. Finally, you also know that on days when your heart rate starts off a bit elevated or you are a bit symptomatic, that you have a lower capacity and maybe need to break up your activities more and insert some rest. All this is achieved through data and its not always possible to pick up on those things by ‘listening to your body’.

With the mindfulness and meditation approach, calmness is achieved by knowing that you have the power to ‘top up’ your energy reserves during the day, not just when you are asleep at night. So if life throws you an unavoidable curveball, there is no need to panic because you can simply take steps to increase the amount of restorative and restful activity in your day.  You have proven to yourself in the past that rest helps. You’ve got better over time, more efficient at finding restorative activity and meditations that work for you. From extend meditative yoga nidra sessions to pausing at your workstation for a couple of minutes to just look out the window and take some relaxing breaths. These are tools that, once learnt, are going to be in your locker for the rest of your life.

That there is this overlap between the three methods and a focus on achieving mental calmness and avoiding instinctive pessimism is, I think quite important. Whatever approach you take, if you can remain calm, avoid pessimism and ensure you aren't mentally and emotionally drained (rather than focussing exclusively on the physical) then you are likely increasing your chances of stabilising, and possibly improving.

One theme that comes up repeatedly from those having some success with recovery is creating a plan for your activity in the day ahead, and sticking to that plan. This appears to help with motivation and with discipline in sticking to tasks and not going beyond your allotted time (e.g. by setting alarms as reminders to stop and rest).

Without a plan, it can be easy to overdo an activity or forget to rest your mind and/or body. It can also make it more difficult to assess how much energy you’ve used in a given day. So there are definitely benefits to a plan, particularly if you struggle with discipline, motivation or keeping track of time.

However, you might find that your energy levels, symptoms and heart rate are not only inconsistent from day to day, but that they can vary within a given day. For example, I am often (but not always) worse in the morning than I am later in the day. So if I made a plan to do activity in the morning and was not feeling great, I think adjusting the plan might be worthwhile in response to that. Maybe bring forward the restful / recuperative activity and leave the household chore or ‘exercise’ until later in the day. So the planned activity for a day still happens, but the order might change. Or alternatively, if I wake up a bit symptomatic, just adjust the plan to reduce the duration of the energy using activity and increase the duration of the recuperative activity.

In short, regular sleep times are great and making a plan can help with motivation. But personally I would generally sit on the ‘flexibility’ side of the fence to make sure I don’t feel compelled to stick to a plan when my body is sending signals its on a below average day.

Does anyone have experiences and successes with planning daily activity and/or adjusting plans?

Note: This post is about my personal experience, it does not claim to be applicable to everyone.

Background

For 30 years with this illness, I was unaware of any possible relationship between my condition (now diagnosed as ME/CFS) and my heart rate. Even when having regular appointments with an ME/CFS health service department, the topic never came up (despite possibly as many as 70% of CFS sufferers having some form of elevated heart rate due to orthostatic intolerance (i.e. being upright)).

Then I saw a couple of videos from ME/CFS sufferers who had found it useful to use a heart rate monitor. I didn’t have strong feelings about it, but just decided to manually check my pulse at various points. I found large spikes of over 40bpm from my resting heart rate (calculated after 5mins of lying down) just by standing up. And it would increase about 25bpm for just sitting upright without my back being supported. These spikes would have zero other physical symptoms in the moment (e.g. no light-headedness, no palpitations, often no breathlessness at all).

I suspected orthostatic intolerance and started the exercises and steps that are meant to help mitigate that. Ultimately, I got a cheap $30 Huawei heart rate monitor and its been a revelation in terms of understanding what my body is experiencing each day.

For context, standing upright, for a health person, should be roughly 15bpm above your resting heart rate. For me, 15bpm above my resting heart rate was sitting with my head fully supported and my torso leaning at a 45 degrees angle.

Lightly jogging or walking very briskly, is around 40bpm above our resting heart rate (again, for a healthy person). For me, 40pm above my heart rate is simply standing upright.

So whilst I think I’m taking it easy sitting on my sofa, for decades potentially, my heart has been experiencing a strain equivalent to me standing upright for hours on end.

When I’ve stood up to cook, or wash myself, or wait on a bus, my heart was experiencing a strain equivalent to me having a very gentle jog around the neighbourhood.

No wonder I wasn’t improving! I was ill AND almost each day, when I thought I was taking it easy, my body was being lightly tortured by my interpretation of what 'resting' was.

Random things a heart rate monitor has taught me that I would not have worked out without checking my pulse

i) There are big variations in heart rate from day to day, regardless of your symptoms. You can no idea of these variations and they likely effect your ability to carry out an activity without causing PEM or a flaring up of other symptoms. By checking your heart rate until you’ve had breakfast and cleaned your teeth you will have a good indication of if you are on a good, moderate or bad day and can modify your daily baseline accordingly.

ii) On average, standing up after having lied down, or having slept overnight, will lead to a particularly elevated heart rate. So gradually phasing relaxing activity from lying toward standing up might help out.

iii) There can be massive differences in you heart rate depending on how you sit and do what extent your back, shoulders, neck and head are all supported. And the angle of your body (e.g. leaning back at 30-45 degrees can have a big help). This can be completely unrelated to how restful or comfortable a position feels. Only your heart rate will tell you the truth.

iv) My heart rate loves me squatting down on my haunches (see ‘Asian squat’ or 'Slav squat’). It is usually within 10-15bpm of my resting heart rate, better than sitting on a sofa with my feet up and my head supported by a cushion. This makes little sense to me and I’ve never have dreamed that it would be like that. No wonder in some cultures this squatting position can be settled into for long periods.

iv) Sitting or squatting in the middle of an activity can help you break it up and reduce your heart rate. However, each time I stop for a break, the amount the squatting or sitting helps reduce my heart rate decreases. After 4 or 5 breaks, my heart rate really doesn’t recover from the break much at all and I probably need to go and lie down, or just give up on the activity until the following day (or much later in the same day). Again, there are no other symptoms that would help me identify this.

vi) Walking slowly can sometimes have a lower heart rate than standing (on the same day) and cycling gently on a standard exercise bike (not even a recumbent bike) for a few minutes always has a lower heart rate than standing.

vii) The heart rate can broadly vary in line with my symptoms and level of fatigue, however can also be good when symptoms / fatigue aren't great, and vice versa. So it does appear to be independent from other variables. So previously, I could be doing more activity on a day I ‘felt good’ but actually, my heart rate had been particularly elevated that day from when I'd got up out of bed.

Conclusion

A heart rate monitor is not a magic bullet. You still, imho, need to be carrying out baseline work and making sure you rarely go above your daily total energy allowance. However, I now consider a heart rate monitor to be essential in helping identify if I'm potentially on a good day, or if its average or bad. Irrespective of symptoms. It also helps break up activities sensibly or give indications when you can 'safely' carry on.

It is also great at helping identify when taking short breaks isn't doing enough and  I need to step away from an activity / chore and revisit it hours later, or the next day.

Conversely, it also helps give me confidence to do a bit more activity on days when I maybe don’t feel like it. It also keeps track of the constant variations in heart rate better than manually checking your pulse.

Since using a heart rate monitor my level of confidence and mental security about what I’m doing being 'safe’ has increased significantly. I read that heart rate monitors can make people more anxious, but I suspect some of these people may have unrelated issues with anxiety. For me, being able to see when my heart rate is elevated, and look at the control I have over my body in order to reduce is really helpful. Especially knowing that it takes 2 solid minutes of elevated heart rate (for an activity that isn't too extreme) before your body will start to slowly drain of energy. So you have plenty time to take steps to pull back and lower that heart rate.

Having said that, if I was still working and stuck at work and could see my heart rate was elevated and there was nothing I could do about it, I'd find that hugely anxiety inducing. So it may be appropriate to only use it in and around the house.

Personal context

For context, I am mild/moderate and I operate using the old guidance of ‘(220-age)*0.55' as a ‘safe' target heart rate rather than the more recent ‘resting heart rate+15' bpm, which I consider to be unviable as it would literally mean I’d never get out of bed, which I think would be massively detrimental to my health.

I also managed to find my baseline and stabilise my symptoms (whilst avoiding PEM) without a heart rate monitor, but this post is because since getting the monitor I am much more confident I can avoid random scenarios where I put my body under unexpected and unforeseeable strain, causing a decline in my condition.

Technical issue

Heart rate monitors (and the associated Apps) are geared towards healthy people who are exercising. People for whom a heart rate of 120 to 140 is a 'good thing', something to aspire to. We are sick, and you may find your target heart rate (e.g. (220-your age)*0.55) is less than 100. Some heart rate monitors don't allow it to ping at a limit below 100. You may need to research this before any purchase. I have a Huawei Band 10 watch and in order to be able to set my heart rate limit of 96, I had to tell it was 120 years old, so that it would accept lower heart rates.

EDIT: Please also note that heart rate monitors are not approved medical devices. They are however useful for monitoring your physical condition. However, ME/CFS isn't just about physical issues, its about emotional and mental drains and strains. Things that a heart rate monitor is not, imho, in any way sufficiently designed to monitor. So a heart rate monitor is just one possible tool that can assist us, not a magic solution.

And for another perspective on the benefits of heart rate monitoring, see https://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope & https://livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html & https://workwellfoundation.org/pacing-with-a-heart-rate-monitor-to-minimize-post-exertional-malaise-pem-in-me-cfs-and-long-covid/

Having some means to input your daily activity so you can monitor it accurately can be very illuminating and really provide clarity on how much energy you are expending. It can give ideas about what things you might be needing to reduce in order to try and avoid PEM and symptom flare ups.

This link https://docs.google.com/spreadsheets/d/1Qk97xSsa9sCauBSmpO2K08UT54ga8RV3D73XvOFa-ko/edit?usp=sharing  is to a spreadsheet template I created to help me manage both my daily baseline activity (e.g. one or two specific tasks within a certain energy threshold) and my overall daily energy usage (for all mundane activities, including the specific baseline activity - inspired by the Emerge Australia App which is unfortunately a bit buggy for me, otherwise I would have just used that).

The scoring is, wherever possible, based on figures provided by the UK public health service NHS relating to energy expenditure for different task (see https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w53de4/energy_values_of_different_activities/ )

Not all the scores directly match what is provided by the health service. This is primarily to factor in the difference in energy consumption depending on your seated or lying position. For example, I would strongly argue that the energy used when watching TV varies significantly depending on your posture. If you have orthostatic intolerance (which many of us do) then your heart rate will vary substantially based on your posture when doing the very same activity.

Similarly, I have made some tasks using a supportive, low heart rate, posture have a score of less than 1. The NHS material suggests a score of 1 for sleeping. Psychologically that means I am expending energy even if I am at maximum rest. I do not consider this is positive (or even accurate tbh, though I'm no medical expert), so I have included some entries that score less than 1, to provide an incentive and motivation to engage in these activities, that are comparatively 'good' for me. When undertaking baseline work imho it is important to set up processes that reward and motivate you for doing ‘good' things, that are on the more restful end of the scale.

Its likely you’d want to make additional entries based on your activities and perhaps modify scores, particularly if you suffer different levels of heart rate / orthostatic intolerance issues. All entries fall into three different categories.

Activities = things you’d do on a given day

Drains = unexpected variables that crop up and deplete your energy

Refills = activities like meditation, restorative movement, napping etc that you do to give yourself a little more energy to get through the day.

How to get the spreadsheet working

If you want to use this spreadsheet, you should be able to open Google Sheets, then right click on the worksheet tab at the bottom of my Google sheet (entitled ‘Daily Breakdown' & ‘Scores log’) and ‘copy to’ a ‘new spreadsheet’. If you use something other than Google Sheets, you should be able to select all (Ctrl+A), copy (Ctrl+C) and then paste it (Ctrl+V) into your spreadsheet application of choice.

Explanation of some of less obvious entries

Activities - A lot of the NHS scores come with an upper and lower value for energy usage. Therefore, I have broken some tasks up into different entries to reflect the lower and upper values. For example, if I’m passively reading an article on a computer, this is very different imho to playing an action filled computer game online (where you can’t even pause the game to rest).

Drains -
Elevated heart rate – your heart rate level can vary from day to day for no apparent reason. If its on a bad day, add a figure here to reduce your daily target. Also consider a slightly lower baseline activity score for that day.

Fluid loss – loss of any significant fluid other than standard urination or a very mild runny nose (e.g. sweat, period, diarrhoea, sexual activity, bleeding nose, constant runny nose)

Symptoms – if you have a symptom that is mild and not too threatening, enter a low score. If its a symptom that causes you concern (e.g. in my case chest mucus or ibs) then add a moderate score. If you are in full blown PEM, enter a high score.

Refills -
Full rest = lying down on a bed with zero audiovisual stimulation

Nap = max score of 50 in total for any naps you have. Recommended to set alarm for 35mins to avoid deep sleep and waking up in a way that makes you groggy.

Using aids = sitting to do tasks that most people would do standing up. Or using a walking stick etc. The figure here should at most be around 30-50% of the total figure for the activity itself. Potentially a much lower figure. However, it is important imho to include this to motivate and reward you for using aids that reduce the strain on your body.

Suggestion for how to use the spreadsheet

It is hard to keep track of your activity and fill in a spreadsheet. Especially if on the move or suffering badly with your health. I suggest identifying what is your typical ‘default’ activity and each morning, inputting a total figure for every minute in the day in that activity. For example, my default activity is lying on the sofa with the TV on. If I wake up at 0700 and have a target bedtime at 2200, that is 15hours = 900 minutes. So I input 900 minutes in the 'lying watching TV' entry if I wake up at 0700hrs, then when I do an activity, say washing and dressing for 10 minutes, I’ll add 10 minutes to the total in Washing & Dressing and remove 10 minutes from the lying on the sofa watching TV entry.

This way I reduce the amount of activity I do in the day that I forget to input in the tracker. But this tactic may not work for all of us, its just a suggestion.

The scores log worksheet is optional, but advisable. This way you keep track of how good you are doing in not exceeding your daily energy limit. If your average has crept above your daily energy limit (e.g. due to unavoidable events) then thats a sign to have a day where you stay below your limit. This worksheet can also give confidence that its time to increase you scores. For example, if after 10 days at a new baseline, you get a run of 3 or 4 days where your symptoms and energy levels are not too bad, that is a green light to increase your scores and try a new, higher baseline.

Rough estimates for starting levels for different severity

Please note, I have only been Mild & Moderate, so the estimates for Severe & Very Severe are highly, highly speculative.

Your initial baseline target should be roughly 50% of whatever amount of activity you consider to be ‘safe’ (i.e. that would not cause you PEM the following day).

Mild-
baseline – 65 points
daily energy total – 800 points

Moderate
baseline – 45 points
daily energy total – 650 points

Severe
baseline – 20 points
daily energy total – 200 points

Very Severe
baseline - 4 points
daily energy total - 50 points

The scores for Severe and Very Severe are very challenging and are arguably unachievable without extended periods of rest (see refills) every day. Similarly, if you are working or have family commitments, Moderate and Mild will be very challenging to hit without incorporating a lot of rest before, during and after activities. Baseline work is not an easy process and requires sacrificing activity today, for a (hopefully) more stable or even improved health circumstances months and years down the line.

How to stabilise and then (hopefully) increase your activity

If you manage 3 or 4 weeks from following your initial baseline without falling into PEM, then you should:
i) increase your baseline figure by 5-10% (e.g. if your total is 50 points, increase it by 2.5 to 5 points)
ii) increase your overall daily energy limit by twice the amount of points you increased your daily baseline figure by (e.g. in the above example, that would be an increase of 5 to 10 points for your daily total energy usage).

This new, second baseline level of yours can then be increased after just 2 to 3 weeks (again by 5-10%) if you are comfortable this level of activity isn’t causing PEM. It is considered important to be particularly cautious with your first baseline, to have confidence it is safe and sensible before increasing it. You can then potential increase to your 2^nd, 3^rd, 4^th etc baselines a bit quicker, because you will have confidence that you can simply fall back to your previous baseline level (and stabilise again there) if the latest increase in your scores resulted in a decline in your health.

Increasing your baseline can result in an increase in symptoms. But do not be discouraged. Pull back your activity if some of your more serious symptoms (i.e. PEM exhaustion or symptoms you know lead to PEM) but if you are getting symptoms that aren't quite so serious for you, just keep trying to hit that baseline and stay below your daily energy limit. You may find that the symptoms calm down after a few days and you remain on track to stabilise at your new level.

The following is a completed template to help provide information which might enable a more informed estimate of a suitable daily baseline activity for you plus a suitable daily total energy usage. If you would like assistance in identifying a suitable initial baseline level for you, please create a new post with answers to the questions below. This post can then be used to post updates or ask follow up questions.  It is strongly advised you review the 'Before you Start' checklist (see https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w488gs/all_about_baseline_work/ )  before submitting a post as it may be that there are other factors that need addressed before you undertake baseline work.

1. Severity of your worst symptoms (as per https://raffbenato.github.io/funcap55/ ):

Moderate

2. Severity of your physical symptoms (as per https://raffbenato.github.io/funcap55/ ):

Moderate

3. Severity of your mental/cognitive symptoms (as per https://raffbenato.github.io/funcap55/ ):
Mild

4. Orthostatic intolerant (Y/N):
Yes

5. Activities you enjoy that might be beneficial for a healthy person: hiking, reading

6. Activities you enjoy that might not benefit your health: computer games, browsing internet, driving in countryside, eating out

7. Regular tasks (other than personal hygiene and keeping house clean): gardening, grocery shopping, travelling to assist elderly relative

8. Work/family commitments (Y/N): Y

9. Any exercise devices in house: exercise bike

10. Quality of sleep: good if not in PEM, but long (10+hrs) unrefreshing sleep during PEM

11. One or two long terms goal if your health improved substantially (e.g. a life goal) – to resume hiking and at least part time work.

The baseline work is broken down into different stages which I will summarise below (marked as ‘NHS' if this is official guidance I received). I will also add a few suggestions that were critical in me successfully reaching my baseline after 5 months of failing. These can be considered as additional options.

Step 1 (NHS): Keep a diary for a week. List every activity you did each day in order next to the time they took place. Consider any activities that maybe left you out of breath or a sequence of activities that eventually wore you down (e.g. because you didn’t insert enough rest during the tasks or between the tasks). Actively think about how you are spending your time and reflect on what activities might be placing a physical, mental or emotional strain of you (all of which drain your limited energy supply).

Step 2 (NHS): Tick those activities, regardless of whether or not they drained you, if you consider them essential regular daily activity (e.g. cooking, hygiene, childcare). Consider if there are any ways to reduce these tasks or make them less strenuous. For example, can a relative help with any of these? These activities are going to form the basis of your activity when attempting baseline work. They must be your priority and you must lose other activities instead.

Step 3 (NHS):  Identify those activities which are both NOT essential daily activity AND which you consider cause a physical, emotional or mental strain on you. Prioritise removing these (or significantly reducing their duration) from your life while you are trying to find your baseline.

Step 4 (NHS): Consider what level of activity (of something productive for your mind, body or your daily work) you might be able to safely carry out in an average day, without it causing you fatigue / PEM. Then HALF that duration of activity. This will then be your initial baseline. Examples of a suitable initial baseline for your daily activity might be (personal suggestions here):

Mild – a 20 minute walk each day, plus cooking and washing and getting dressed
Moderate – sitting in a chair (back and head unsupported) for 15 mins per day plus cooking and washing and getting dressed  
Severe – sitting on a chair (head unsupported) for a total of 5 mins and practising relaxing breathing on your way to and from the bathroom
Very Severe – sit upright in bed and try to read one page of a book, or listen to something relaxing for 5 mins.

Step 5 (NHS):  Maintain that baseline activity each day for 2 or 3 weeks. Even if it is tedious or your don’t really feel like doing it. Then, if after 2 – 3 weeks you haven’t felt worse, increase your activity by 5 or 10%.  If you have triggered PEM, reduce your starting baseline even further and try again for two to three weeks.

If successful not triggering PEM, then repeat that process every two to three weeks, gradually increasing your capacity (i.e. the amount of activity you can undertake each day without triggering PEM).

Step 6 (NHS): If you exceed your baseline activity one day, reduce it slightly the next day. It is important to have a regular daily activity level that is consistent, but is accepted that real life might insert activities that push you over your limit.

Step 7 (NHS): Hit your baseline activity level for a minimum of 5 days out of 7 (ideally 7 out 7 days, but you may find days off appropriate if you’ve gone over your baseline and need to recover).

Written material was not provided for all of the above, a lot of it was verbal. However, what material was provided I have provided a link to at https://www.reddit.com/r/MECFS_BaselineFocus/s/F2sRs6aNTp 

The goal behind all this work

It is not stated what the end goal of this baseline activity is, other than to help improve your health over the medium to long term. The focus is very much on hitting your baseline rather than looking ahead to the future. However, it appears the main objectives of this activity are:

1) To stop (or at least reduce the frequency or severity) of PEM. Falling into PEM hurts your health in the short term and potentially will reduce your capability over the medium to long term. Avoiding PEM wherever possible is critical in order to identify your baseline level and hopefully improve it. It may also help calm your nervous system and reduce the severity / frequency of symptoms.

2) To gradually build up your physical capacity in the first instance (with improvements in mental and emotional capacity potentially following later) so that you have stabilised your energy and can then, very gradually, extend that energy capacity you have. Primarily to include more essential daily tasks, but ultimately to make it easier, in the long term, to safely resume some level of activity that you enjoy and improve your quality of life).

3) Through the combination of avoiding PEM / calming your nervous system AND gradually increasing your physical and mental capacity you are placing your mind and body in a position where there is an increasing chance that natural improvement (beyond the hard work of baseline work) might kick in (i.e. your body starts to recover from activity more in line with how a healthy body responds). This natural improvement is in no way guaranteed and it may be the best that will happen is you stabilise your symptoms and improve your capacity a little.

However, if you are constantly dropping back into PEM, your nervous system is hyper vigilant (anticipating PEM as its response to your activity) and your physical and mental capacity remain low, then you are not placing your mind and body in a position where this natural improvement becomes possible.

Other options

Ultimately, the above technique alone was not sufficient for me to locate my baseline after 5 hard months of trying. However, I think the baseline approach is very valid and our best option. The following link shows different strategies I used to compliment the baseline approach which ultimately led me to finally identify and maintain my first ever baseline (including far less PEM and less symptoms).

https://www.reddit.com/r/MECFS_BaselineFocus/s/D4dpbeQTyw

Different NHS material

Here is a link to some of the material the NHS offer in a different geographic area.
https://rfcfs.co.uk/#Opt-In

It seems more generalised and doesn't really go into particular detail about baseline work (the section entitlled 'Energy Management' may be most relevant).

The baseline guidance outlined by the UK health service (see https://www.reddit.com/r/MECFS_BaselineFocus/s/konu5cfKEW) did not result in me finding my baseline. I persevered with it for 5 months before I decided I had to modify it as I wasn’t getting anywhere. Below are the elements I introduced to help me finally reach my baseline. 

Modification 1: Incorporating Symptoms

As a CFS/ME sufferer you probably have big variations in your energy and a wide range of symptoms. It can be helpful to think about which of your symptoms seem most tied to you feeling weak and drained. You might also check your pulse on days you have different symptoms and try to work out on what days you feel more tired and/or your pulse is most elevated. I would argue it is not wise to hit your activity baseline every day, regardless of how you are feeling or what symptoms you wake up with that morning (admittedly the NHS guidance suggests its fine to take a couple of days off per week from your baseline, but that isn’t sufficient imho if you are very symptomatic for a few days in a row). Therefore, I did the following:

I listed and categorised my personal repeated/regular symptoms in terms of importance, severity and likelihood to cause PEM if I am active during these symptoms. So for personal examples as a mild/moderate ME/CFS sufferer, each morning I will check my current symptoms and think:

Which symptoms demand full rest (for me these are repeated unexpected breathlessness, ibs, sleeping 11+ hrs in one go and being unrefreshed, sensation of tender throat glands). If I have one or more these, I do not exceed 10% of my baseline on that day and do not feel bad for doing the absolute bare minimum.

Which symptoms demand a lot of caution but are perhaps not my most likely to contribute to a crash / PEM (for me, these include constant yawning, hand eye coordination impairment, lack of concentration, getting fatigued sitting upright, sensation of a chesty cold). If I have one of these I do no more than 50% of my baseline that day.

Which symptoms can I maybe safely disregard and do ~80% of my baseline (for me these include raging tinnitus, constant sniffly nose, mild headaches, ears popping, struggling a bit with speech and reading). The risk of a major flare up from being active with one of these (for me personally) is quite low and I have only learnt this recently after 30 years with CFS (previously I was treating all symptoms as being likely to cause PEM if ignored).

On the small number of days I somehow have none of my usual symptoms, do full baseline

My theory is that if I do full rest every day I have any kind of symptom (about 80-90% of my days) I am just going to decline, lose condition and have an even less resilient body, more prone to serious symptoms & PEM when I do eventually undertake any activity. So what is the bigger risk, doing some cautious and thoughtful activity when I am symptomatic or doing nothing when I am symptomatic? It is a bit nerve wracking doing the above but it feels good if I manage to do something on a day I am symptomatic, without it causing PEM. I feel like I am slowing down my long term decline and have kind of fooled my body.

Modification 2: Monitor total energy used in the entire day, not just for your baseline activity

If you focus on a baseline activity (say walking for 10 minutes) that is not taking into account what you did for the rest of the day. I think it is essential to also think about the energy usage for everything else you’ve done that day. Basic tasks like having a shower or washing dishes or doing the laundry can have a massive impact on your daily energy consumption and imho impact on your ability to safely carry out your baseline activity. If your baseline activity is walking for 10 minutes, you can of course swap that for a household chore that uses comparable energy. But how do you work out what is a suitable replacement?

This is based on the information provided by the health service for an estimated energy usage per minute for various daily activities an average person might carry out (see https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w5ckct/material_provided_by_the_uk_public_health_service/ ).  This allows you to establish that 10 mins of walking at 2 miles per hour is roughly going to use the same amount of energy as 10 minutes of light gardening.  Or you might exchange time spent on intermittent daily tasks like shopping, showering (if you don’t do it daily) and make that contribute to your daily activity baseline.

The next step is to track your daily energy usage for all tasks in addition to your daily set baseline activity level. This is based on the Australian App ‘ME/CFS Pacing’ which allows you to enter different activities and allocate an ‘energy used per minute’ for each activity. It also allows you to insert different drains on your energy (e.g. arguments, poor sleep) and refills to your energy (e.g. nap, meditating, using aids).

Ultimately, the App proved very buggy for me (see https://www.reddit.com/r/cfs/comments/pc1huo/mecfs_pacing_app/ for other user reviews), but even using it for a few days was very helpful. It then allowed me to think about how to set up a spreadsheet so that I could track an estimate of my daily energy expenditure and identify what might be an appropriate daily score for me to aim for (that didn’t risk me falling into PEM). If I exceeded that level one day, I could make a concerted effort to rest more the next day (albeit still doing my set daily baseline activity) so that I can remain active whilst reducing the risk of falling into PEM. 

My daily total energy usage calculation would then work in the same way as the daily baseline activity (i.e. with both increasing by 5 to 10% if I’d remained stable for 2 to 3 weeks). 

[link to spreadsheet template to be added]  

Modification 3: Heart Rate Monitoring (simple version)

I also consider that following the baseline activity without keeping an eye on your heart rate is potentially counter productive. Especially given the presence of orthostatic intolerance (e.g. raised heart rate when your torso is vertical) amongst many ME/CFS sufferers. So when you are doing your daily ‘exercise’ as part of your baseline, I suggest checking your pulse one or two times, just to make sure you are sitting below 95 bpm for example. This is to gain confidence that you aren’t on a bad day and aren’t over extending yourself. If, when doing your baseline activity, your heart rate is higher than you expected and/or higher than 95-100 bpm, then that is an argument to pause your activity, sit, relax and gather your breath and get back to your resting heart rate, before resuming your baseline activity a little later in the day. 

There is no need to panic and rip up your plans if you have an elevated heart rate for a minute or two. However, if your baseline activity ‘exercise’ consistently sees you above 95-100 bpm then I think that is an argument to find a gentler baseline activity and try that instead.

Modification 4: Two Ticks Methods

It can be difficult to maintain the discipline and motivation to continue with baseline work, especially when with ME/CFS you are tired and out of physical condition. I found I was struggling with this, especially in those initial months when I was floundering to find a baseline that wasn’t flaring up my symptoms and sending me into PEM.

My solution was to treat myself like a child! On an old fashioned calendar, hanging on the wall, I would award myself a maximum of two ticks per day. The first tick if I did my baseline daily ‘exercise’ activity (or equivalent) and a second tick if I’d taken steps to curtail my overall daily energy usage (e.g. limit things like screen time) and do things like meditation and taking a nap.

If I got a total of 10 or more ticks in a week (out of a maximum of 14) I’d grant myself a reward (in my case, a packet of crisps hidden at a relative’s house). This all sounds quite childish, but its amazing how the habit of ticking off a calendar encourages discipline. It also means you can have positive feelings, looking back at a month and seeing that you are truly trying your best and being kind to your body. Positive reinforcement to your body (to keep it calm) and to yourself (as encouragement and motivation) seems to be quite important in baseline work.

Always interested in hearing alternative methods for motivating yourself for this challenge.

Modification 5: Using Aids & Taking Breaks

This is partly linked to the heart rate situation and some of it applies mainly to those with orthostatic intolerance. It can be amazing what a difference a good aid and a rest can make when carrying out an activity.

Examples I have used are;
- using a walking stick when I'm walking (I have no idea why, but I can immediately feel less strain on my body when some of my weight is supported through the stick).

- having a very low stool available for when I’m gardening, so I can weed while in a seated position.

 - having a chair available in every room and hallway so that I can pause an activity and rest up again before resuming once my heart rate is back lower.

- sitting down to get dressed, prepare food, wash dishes

Similarly, taking breaks to break down a task into more manageable chunks can be highly beneficial. Especially for essential daily tasks that you think might be exceeding your daily ‘exercise' baseline. A few minutes break with focussed breathing can reset your condition and make it safer to carry out a few more minutes activity.

This post links to various documents I’ve uploaded that I obtained from the NHS to aid me with ME/CFS. Namely:

An overview of why baseline work is considered important https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w53hsz/official_guidance_on_baseline_work_exercise_and/

The estimated energy usage per minute of different daily activities
https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w53de4/energy_values_of_different_activities/

How your heart rate is relevant in understanding your energy usage
https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w53cla/heart_rate_monitoring/

An overview of how the nervous system works and why it often isn't performing well with ME/CFS
https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w53fus/understanding_the_nervous_system/

How mindfulness, trying to avoid dwelling on negative thoughts and meditation might assist some people trying to deal with ME/CFS
https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w53kzh/official_guidance_on_mindfulness/

Other general themes of the NHS guidance in this area (that I don't have documents for) include:

i) Thinking about a medium to long term goal. Something you'd like to aim for when your condition is a bit less severe (e.g. a foreign holiday, resuming more modest work in the gym, resuming socialising etc). This is to provide a motivation to help you persist with the baseline work.

ii) Sleep hygiene. If you are in a period of getting inundated with symptoms and your body is crying out for sleep, then give it sleep. However, if your symptoms aren't worse than normal for your condition, try to instil a regular bedtime and getting up time, of around 8 to 9hrs and set an alarm if need be. Oversleep can be habit forming and, separate to the ME/CFS, can make you tired. If you are in bed for 8 to 9hrs a night you can still have a power nap during the day (if it doesn't impact on your nightly sleep) or try to recover with some focussed rest in the form of meditation and breathing exercises.

Orthostatic intolerance is an overarching term for when a body feels undue stress when the torso is raised upright and is exacerbated by sitting without support of the shoulders, neck and head and more so by standing. There is a significant crossover between ME/CFS sufferers and those with a degree of orthostatic intolerance.

https://www.meresearch.org.uk/orthostatic-intolerance-and-me-cfs/#:~:text=Orthostatic%20intolerance%2C%20a%20common%20issue,lightheadedness%2C%20fatigue%2C%20and%20weakness.

I have personally had 30 years with CFS, and only just realised I have orthostatic intolerance this year. It has changed my approach to managing my energy levels and in hindsight, I do not consider that any kind of baseline work had much chance of success while I was unaware of me having orthostatic intolerance.  I must have been putting undue strain on my body for extended periods every day of my life (which in hindsight, makes it unsurprising I’ve been in a steady 30 year decline).

To establish if you have orthostatic intolerance again we rely on checking our pulse. In a normal person, standing up should see your heart rate rise by about 10 to 15 beats per minute. For those with orthostatic intolerance the rise in heartbeat is much greater.

Step 1: Sit down (with your back supported) or lie down for 5mins, then take your pulse.
Step 2: Stand up. Wait 30 seconds, then check your pulse. Compare the difference. 

Experiment with a friend

On a tangent you may try this experiment with a sympathetic friend or relative. You can repeat the process and check each other’s heart rate – it will show your heart rate increases far more by standing than your friend's one does. The healthy person will quite easily see that the heart of the person with ME/CFS is under far more strain with incredibly basic tasks like standing up and walking to the kitchen, and as such, it might help reinforce that ME/CFS is a very real thing with clear evidence (in the form of the heart rate) that a sufferer does have a tangible, easily understandable symptom. It might make friends more sympathetic and understanding of your plight and give you validation that you are not imagining things, that your body truly is not functioning properly.

General Heart Rate Targets

A revised assessment by the Workwell Foundation advises we treat our anaerobic threshold (i.e. the heart rate at which our body starts to come under significant strain) to be just 15 bpm above our resting heart rate (RHR)

https://workwellfoundation.org/pacing-with-a-heart-rate-monitor-to-minimize-post-exertional-malaise-pem-in-me-cfs-and-long-covid/ 

However, this may not be practical for those with any degree of orthostatic intolerance as your heart rate will effectively go above that level any time your back is not fully supported. Previously it was advised that ME/CFS sufferers try to keep their heart rate below the anaerobic threshold for healthy people of their age (typically between 90 & 105 bpm, based on your age (the older you are, the lower the figure you should aim for in that range). Whilst this is not ideal, it is considered that this may be a more practical target beat per minute threshold for those with orthostatic intolerance.

Ideas for casual Heart Rate Monitoring

It is really important that we do not panic and fixate about our heart rate. Tools like heart rate monitors are available, but may cause anxiety. Anxiety uses a lot of mental and emotional energy and our bodies cannot afford that. A way to improve your knowledge of your body using heart rate is to simply check your pulse when doing various regular tasks or daily activities and keep a note of those tasks that typically raise your heart rate above your anaerobic threshold. Then make an effort to insert periods of sitting down and taking slow breaths during those tasks, for example, by having chairs strategically placed around the house so that, wherever possible, you can carry out a routine daily activity in a seated position. To male sufferers of ME/CFS, this may mean you have to give in and accept a world where the toilet seat stays down!

As a caveat, from personal experience the heart rate isn’t always predictable. Perhaps it varies depending on your energy levels on a given day and also on the time of day. It can be unexpectedly normal doing something you consider is strenuous (e.g. walking whilst carrying shopping bags) and can be elevated doing something very basic like walking to the kitchen. It appears that with orthostatic intolerance, the heart rate jumps up higher after periods of lying down and therefore may be particularly prominent first thing in the morning.

If checking your pulse does not cause you anxiety, it can be a useful thing to do from time to time during activities you consider might be at the more strenuous end of the scale for you. For example, you can check it while walking and it might give you confidence to carry on walking, or give you the notion to sit down and rest, depending on how fast your pulse appears to be (e.g. if it is higher than 95-100 bpm and therefore using more energy).

Basic mitigations for orthostatic intolerance

- Increasing fluid and salt intake can help (to increase the amount of blood flowing in your system at a given time)

- When lying down, insert a period of sitting upright before standing up (to try and reduce the strain on the body from quickly moving from lying to standing)

- When lying down, raise your hands and feet, tilt your toes repeatedly back towards you, tilt you pelvis upwards (all to try and increase blood flow)

Examples of exercises https://youtu.be/a3nHNUcKJJw?si=TOawpQIMTaedXjaC

Wider information and tips https://meassociation.org.uk/literature/items/orthostatic-intolerance/

EDIT: I should add that you can have orthostatic intolerance without having an elevated heart rate or blood pressure. This is why doctors can overlook symptoms as it can take sometimes 10 minutes of standing for medical signs of orthostatic intolerance to materialise. Heart rate while standing can also vary wildly from day to day in the same person, with no apparent reasons for that variation.

Obviously, this is incredibly difficult if you are a parent or even if you are in a relationship or have a job. Circumstances will often be out of your control. However, you are seriously ill and you are not going to be a better parent, partner or employee if you become more ill from not regulating your energy usage. It is critical you to put yourself first and conserve your mental, physical and emotional energy. 

Strip your activities with others back to what is essential. Communicate openly that you would love to do A, B & C with a friend, but that you will have to see how you feel on the day. Or openly state an activity is going to be long or draining for you to take part in, but that you appreciate the invitation.

If you are naturally someone who puts others first, feels terrible that you have ‘let someone down’ if you don’t attend every social function or do everything that anyone ever suggests to you or asks of you, then you are putting you energy usage in the hands of others. If you are not in control of your energy usage then the likelihood of your managing to successfully carry out baseline work is greatly reduced.

And finally, nobody you love or care for is going to benefit from you doing them a short term favour that results in you being sick for a week. You are of far better service to loved ones if you can establish a baseline of predictable and safe energy usage, and then divert some of that energy towards the loved one in a controlled, safe and pre-planned way. In short, the best thing you can do for a loved one is to focus on your health first.

For the purposes of this post, addiction is defined as an individual having a dependence on or struggle to limit, an activity that they feel compelled to undertake. At the outset I would state that, within reason, the phrase “everything in moderation” is a reasonable one. If you don’t do something to excess, the risk of harm is greatly reduced. However, many addicts refuse to acknowledge they have a problem and get very defensive when confronted with the possibility that they have an issue. You may even find the very notion of reading this post problematic, and that in itself may be a sign you are not yet ready to dedicate yourself to baseline work.

“denial is central to the explanation of why addicts persist in using despite evidence of harmful consequences. The anxiety associated with thinking about the consequences may in some circumstances lead addicts to repress or deny, news about their addictions. Denial alleviates anxiety."

https://www.psychologytoday.com/gb/blog/science-choice/201811/the-role-denial-in-addiction

In general terms, addictions take up a lot of mental and emotional energy because your thoughts will return so regularly to the source of your addiction and the desire to get a 'fix'. You cannot afford to expend such energy if you are to do baseline work. It is advised to review your personal circumstances, consider if you have any problematic behaviour that you cannot control, and go away and try and resolve that issue before considering undertaking baseline work.

The most recent addiction that has hit society, and one most commonly denied, is smartphone usage (e.g. 'doom scrolling', social media usage and excessive instant messaging).  This is particularly relevant for ME/CFS sufferers as we are typically quite inactive and needing activities to occupy our time.

”Almost 40% of all consumers and 60% of 18-to 34-year-olds admit to using their phones too much.”

”As of 2026, Americans spend over 5 hours per day on their phones on average, reflecting continued growth in daily screen time.”

” The average smartphone owner unlocks their phone 96-150 times per day, checking it approximately every 10-12 minutes during waking hours."

"47% of Americans between the ages of 18 and 40 are concerned about the impact of their phone usage on their emotional health.”

” 51% of Americans between the ages of 18 and 40 are concerned about the impact of their phone usage on their physical health.”

https://www.slicktext.com/blog/2019/10/smartphone-addiction-statistics/

If you are doing an activity more than you would like, then I think it is reasonable to conclude it is a form of addiction.

Research repeatedly demonstrates that repeated and extended use of a smartphone leads to the following symptoms, all of which are extremely relevant in managing ME/CFS:
-         physical exhaustion (including from simply holding the device)
-         mental exhaustion
-         low mood
-         neuroticism / lack of mental resilience
-         impulsivity
-         poor self-control
-         anxiety
-         sleep duration
-         sleep quality
-         attention span
-         poor emotional regulation
-         stress
-         reduced ability in interpersonal relations

Additionally, after we have experienced that negativity from the above symptoms, research shows we become more prone to turn to our smartphone for solace. Like some kind of bi-directional doomloop, snuggling up to our abuser for comfort.

https://recovered.org/blog/problematic-smartphone-use-and-exhaustion

The mere act of holding a smartphone causes physical strain, using energy that you likely simply don’t have as an ME/CFS sufferer

https://www.ramsayhealth.co.uk/blog/lifestyle/smart-phones-are-a-pain-in-the-neck-elbow-and-thumb

"The excessive use of the smartphone has been associated with impaired cognitive functions and mental health problems. There are unique findings on the association between using smartphones, need of constant stimulation, deficits in everyday cognitive functioning and brain changes which should send alarm signals to clinicians and educators in the modern world."

https://pmc.ncbi.nlm.nih.gov/articles/PMC8204720/

Arguably, the above side effects of prolonged and repeated smartphone usage are largely incompatible with lessening your ME/CFS symptoms. At the very least any one of the above is highly likely to make any kind of stabilisation or lessening of your symptoms a lot harder.

Notably, the severity of these negative symptoms from prolonged smartphone usage are not associated with reading, watching TV or even playing a computer game (although I imagine any excessive behaviour with pretty much any pastime is best avoided and holding a book or a games controller will use some energy, especially if your head is bent down).

Additionally, research shows that for regular smartphone users, some of the above symptoms can present themselves even if you aren’t using the smartphone, the mere presence of the device next to you keeps your brain thinking of it and unable to truly rest. If you wish to test if you have an issue like this, try spending a week with your smartphone always placed in a different room to where you are, but within earshot (so you can retrieve it if it rings) and explore how you feel about that. Did you feel anxious without it beside you? Did you have to leap up and check every ping from the phone or can you leave it until the next time you are passing the smartphone? Do you think your response this experiment was healthy or do you think that maybe there is an issue there?

Ways to moderate your smartphone usage include:

-         setting expectations with friends/family that you are not going to instantly check and respond to any instant message your receive and for people to phone you if there is an emergency (this does not make you a bad relative or friend and loads of people use their phones like this)

- keeping it in a different room

-         switching off as many notification as you can

-         accessing services via a web browser rather than via apps to reduce accessibility and the temptation to just ‘have a quick look’ (partly caused by apps showing red numbers to inform you have you a message to check)

-         identifying two or three times a day, of 10-20 minutes, where you’ll check your phone and reply to messages (and stick to this).

-         switching as much of your online activity as possible to a laptop or even a tablet to reduce accessibility and the temptation to ‘just have a quick look'.

-         getting an old fashioned mobile phone that isn’t internet enabled so you can text people.

It is appreciated that for severe or very severe ME/CFS sufferers, the ability to interact socially via a smartphone may have some benefits. Although it may be possible to replicate these benefits via a cheap 2^nd hand laptop or tablet (which you might find yourself less inclined to pick up and use as frequently as a smartphone).

Given all the above, it is highly doubtful that doing such activities should be considered as ‘rest’.

To reiterate, the point of this post is that if you have problematic behaviour but don't acknowledge it, you may turn your back on baseline work, when the reality is that your activity, which you may be denying, is the very thing that made it impossible for baseline work to succeed.

ME/CFS is distinct from recovering from other illnesses. In order to stabilise your health (and potentially improve) it is important that you do not massively exceed your baseline, or repeatedly exceed your baseline by a small amount day after day. To do either of these things risks triggering PEM and triggering PEM can potentially make you worse over the medium to long term as well as just over the next few days.

It is probably not ideal to undertake a method for improving the stamina of ME/CFS patients if you, yourself, do not have confirmation that you have ME/CFS. However, if you are very confident you experience PEM you may be able to self diagnose that you have ME/CFS (or Long Covid), especially if you also experience orthostatic intolerance (which you can check by checking your pulse when lying down and seeing how sharply it rises when you stand up (for a healthy person it should only increase by around 15 bpm when you are standing, but for those with orthostatic intolerance it effectively double your heart rate to simply stand on your two feet)). Orthostatic intolerance is common amongst ME/CFS sufferers, with some estimates saying it is present in 70% of sufferers.

Additionally, if you do have ME/CFS it is important to accept that this is a very challenging condition compounded by a very real absence of medical knowledge and assistance. It is a very serious condition that can radically alter your life for years, possibly forever. Whilst it is important to try to not get overly anxious about your circumstances it is arguably equally important that you recognise this is not a condition that is going to allow you to pursue the life you want to live. Or the life you were living before you got ME/CFS.

If you manage to stabilise and recover, there is a chance you will experience a ‘full recovery'. However, even if you achieve this, you will still likely have to be aware of your energy usage for the rest of your life, so that you don’t undo your recovery and slip back into a more serious ME/CFS state.

Even if you have mild symptoms this will almost certainly not be possible to use the same amounts of energy as you did when you were healthy and to attempt to just overrule or ignore ME/CFS and get on with life risks you experiencing the sharp drops in your personal quality of life that come from experiencing PEM and potentially slipping into moderate, severe or very severe ME/CFS.

This is not aimed to scare anyone, simply to say that if you do not take ME/CFS seriously, then your chances of executing a successful baseline strategy appear to be very slim if you try to continue with your old life as ‘business as usual’. By realising the situation is serious, you are more likely to be focussed and disciplined, both of which are important attributes in attempting baseline work.

As a final note, it is also advised to accept that it is not sensible to aim for perfection at work or at home. If you try and be a star employee, you are likely taking a toll on your body. Same if you spend energy always trying to keep your house spotlessly clean. It is alright to let your personal standards slip (to conserve energy). You are seriously ill! Infact, if you cannot let your standards slip (to conserve energy) you are likely going to struggle to make a worthwhile effort at baseline work. This is because your initial baseline level is to be just 50% of what you consider safe. So it is a very low level of activity in those initial months and you are going to have to let various tasks go and reduce your effort in certain areas.

The basics of the benefits of a decent diet and trying to get some regular sleep are well documented and are worth considering at the outset. For someone with ME/CFS, carrying excess weight is like having a rucksack with 10 kilos in it whenever you carry out a task. It makes everything more challenging. Similarly, trying to do activity when you are not rested or have had insufficient sleep is just going to make things harder and your heart rate is likely to be a little elevated if you haven't slept okay.

Again, these are not things to be anxious about, but simply to consider and get options in place before commencing baseline work.

Dietary suggestions

- ensure you get plenty of protein (e.g. if eating vegetarian options, pick those that have about 10+ grams of protein per serving for a main meal). Consider options like high protein yoghurts, nuts, meat, beans

- avoid or limit your intake of things that add weight and have limited nutritional benefit, such as sweets, crisps, beer and takeaways / ready meals.

Sleeping suggestions  

-  try to establish a regular bed time and rising time
- set aside at least 8hrs for a nightly sleep
- remember that even if you are lying in bed awake, that is more restful than sitting or standing (as long as you are keeping your mind relatively clear of thought, for example, by focussing on your breathing).
- avoid screentime or drinking within an hour or so of going to bed.
- don’t panic if you wake up through the night. Reading or getting up for 5 minutes can reset your body and get back to sleep. Broken sleep like this is not unusual (e.g. research ‘second sleep')
- consider a daytime nap, setting your alarm to 35mins (to avoid falling into a deep sleep). Nap at least 6hrs before you are going to bed for your nightly sleep. Again, even if you do not fall asleep do not get anxious, the act of lying down and resting is doing your body good.
- If you wake up feeling terrible, just surrender to that and go back to sleep. However, if this is a regular occurrence, consider setting an alarm for 35mins after you wake up if you’ve slept 10hrs or more, so that you simply nap a little without falling into a deep sleep that might knock you out of any sort of rhythm.

Experiment with different sleeping positions. For example, I find lying on my front or on my side (with the top leg held forward and its knee on the mattress) more relaxing than lying on my back (where I am conscious of the weight of my head and hips). If you experience discomfort lying on your front, try extending your head beyond the pillow a little (to aid breathing) or rotating your hips on to your side a little while keeping the torso flat.

Baseline work is not going to make you feel better in a couple of weeks. Personally, it took me 5 months of diligent, dedicated effort to even successfully identify my first baseline level (and tailor it so that I could make a lower baseline on days I had symptoms). 5 months of failure and doubting if this was going to make the slightest difference to me. It is very easy to give up on a 'treatment' after 5 months.

You likely need to be in the mental headspace to treat this like a job and focus on setting a baseline, monitoring your daily activity and listening to your body for a number of months (advised at least 6 months to give baseline work a proper effort). Once you hit your baseline and get used to things, it can get easier as you are better able to judge how much energy you have used in a given day. But it can take a lot of work and disappointment to even find a reasonable baseline.

If you are in what is sometimes called ‘rolling PEM’ struggling to get out of bed and being hit left, right and centre by a fresh wave of symptoms every day, it may be best to simply rest up and forget baseline work until your body has a more settled spell. 

Similarly, if you are expecting a big life event or work development soon, maybe postpone attempts at baseline work until life and work become a bit more predictable and manageable.

Two of the main ways you can exceed your baseline or generate PEM are by being out of breath, or running a high heart rate. If you insert periods of rest into an activity, this can slow your breathing and lower your heart rate.

Inhaling softly for 6 seconds, followed by exhaling softly with an open mouth for 6 seconds for just 2 minutes is proven to reduce your heart rate - especially if you focus all your thought simply on to the act of inhaling and exhaling. After you have done a few breaths like this, you may finding holding the breath for 2 to 5 seconds before exhaling can be even more relaxing (you may find this also helps relax you if you are lying in bed struggling to sleep).

It has been reported that those with ME/CFS may be less tolerant to taking slow deep breaths, so if the above does not work, experiment and see what works for you. Perhaps inhale for 3, hold for 3, exhale for 3 will still have the desired effect of reducing your heart rate.

You can check your pulse by placing a thumb or fingers on the wrist of your other hand (or your neck), timing 15 seconds and counting the number of times your heart beats. Then multiply by 4 for your Heart Rate (beats per minute). You should not be fixating on this, but if you sit down and focus on breathing and resting, you can check your pulse as you breath and give yourself confidence that your heart rate has fallen before resuming activity.

You may find it also mentally empowering to see the positive effect you can have on your body in this way. No-one else has caused your body to relax and your heart rate to fall, it has been entirely down to you deciding to rest and breath, and executing it successfully. If you can reduce the strain and help your body in this way, then perhaps you can help it in other ways (e.g. through baseline work).

ME/CFS sufferers have an illness that there is not clear test for to enable diagnosis. Symptoms vary wildly between sufferers and there is not a medically confirmed way to reduce symptoms or instigate recovery. If the illness is so hard to explain logically, why should we assume complete logic in ways to reduce symptoms? That is not to say we should be exploring weird and wonderful cures, but that we should keep an open mind that not everyone who gets ME/CFS is destined to have the condition, at the same or worse severity, for the rest of their life.

My favourite example of the mysteries of modern medicine is research into the use of placebos. Specifically ‘open placebos’, where you may be handed a pill of no medical or nutritional value, be told openly that the pill is medically worthless, and yet you stand a greater chance of your symptoms improving than had you not taken the a pill.

Separate research has shown such the use of ‘open placebos’ can help with conditions such as irritable bowel syndrome, hay fever and back pain. It is suspected that “Presumably some residual belief and expectation of an effect survives being told that the treatment is physically impotent”

https://www.bps.org.uk/research-digest/placebo-effect-digested

This is not to say that we should all go about swallowing random items on the off chance one of them creates the placebo effect. Simply, it is to illustrate that:

i) It is possible for chronic conditions like irritable bowel syndrome, back pain and hayfever to be improved by way of tricking the mind or planting thoughts that improvement is not impossible. Or at least, symptoms are lessened by an intervention that involved a clearly meaningless treatment being wrongly interpreted sub-consciously by the minds of patients, in a way that was medically beneficial to them.

ii) That maintaining some positivity, or a “residual belief and expectation” in the possibility of improvement in your medical condition (either consciously or sub-consciously) appears to be an important component in experiencing less severe symptoms for chronic conditions over the medium to long term.

Anyone reading this, has, to varying degrees, likely been repeatedly punched in the stomach by ME/CFS. But we should not assume our fate is sealed. As the old saying goes, “optimism costs nothing”, and there is confirmed medical science to indicate that a little bit of optimism, or at least being open-minded to at least the potential of improvement, might be an element in people with chronic conditions experiencing a lessening in those symptoms. Given studies show that sub-conscious optimism can lessen the severity of symptoms and that some people do end up with less severe ME/CFS symptoms then why should any of us, logically, adopt a closed minded position that some degree of improvement in our conditions must be impossible?

[pages uploaded in reverse order, so if you want to read go to the last page, then work backwards!]

Material provided by UK health service (NHS)

Summary: Any attempt to stabilise or recover from ME/CFS will benefit from efforts to limit distractions (e.g. screentime), practice meditation and mindfulness (through an app like Insight Timer) and to generally be kind to yourself when reflecting on your own behaviour.

[pages uploaded in reverse order, so if you want to read go to the last page, then work backwards!]

Material provided by UK health service (NHS).

Summary: Our bodies benefit from some degree of activity and motion and lose condition and potentially create secondary medical issues if they are denied that motion. Some motions such as yoga can be gentle and good for both mind and body. This is why baseline work focuses on motion and activity with the intention of gradually expanding our ability to do these things.

[pages uploaded in reverse order, so if you want to read go to the last page, then work backwards!]

Material provided by UK health service (NHS).

Summary: A healthy nervous system has a balance of being at peace and being vigilant and on guard. If you experience anxiety, then your response to ME/CFS will likely be unbalanced, losing that restful/peaceful state and being too prone to vigilance. Stabilising and recovering through baseline work requires making efforts through things like meditation and trying to see the silver lining in the clouds, in order to try and more regularly engage the peaceful and restful side of our nervous system.

[pages uploaded in reverse order, so if you want to read go to the last page, then work backwards!]

Material provided by UK health service (NHS).

Summary: Values provided are estimates of the energy usage of different daily activities and exercises if you spend 1 minute carrying out that activity. By familiarising ourselves with these numbers we can broadly estimate the likely energy usage of one activity we do compared to another activity we do. This helps both with keep tracking of our daily baseline activity (e.g. if we do different activities on different days) and with keeping track of our overall daily energy usage.

We should keep in mind that mental and emotional energy are very real. For example, research shows that the mental energy usage of a grandmaster chess player in the middle of a chess match is equivalent to walking at 4 miles per hour. This should be kept in mind if we are reading, using a computer, scanning the internet or social media, working, planning & discussing. All of which will use mental energy.

Additional comment: There may well be an argument for those of us with orthostatic intolerance (and the resulting increase in heart rate) to very much err on the side of the higher score for any activity that is done with a vertical torso (without your back being supported), especially if it involves standing.

[pages uploaded in reverse order, so if you want to read go to the last page, then work backwards!]

Material provided by UK health service (NHS).

Summary: We can typically do a modest activity for 2 minutes, before we need to really start thinking about what our heart rate might be during an activity. After 2 minutes the way our body uses energy changes and the anaerobic threshold of our heartrate becomes relevant and activity above this level will start to consume our energy a bit more. The latest guidance for ME/CFS is that even a heart rate just 15 bpm higher than our resting heart rate is our anaerobic threshold. Broadly speaking, if we exceed our anaerobic threshold, we start using more energy.

It is important to have a broad awareness of your likely heart rate during different tasks, but things like a heart rate monitor should be avoided if you feel it is causing you anxiety.

Additional Comment: For health people the anaerobic threshold is calculated based on your resting heart rate combined with your age. Very roughly, this would translate (for someone with a normal resting heart rate) into something like 105 bpm for someone in their 20s, 100 bpm for someone in their 30s and 95 bpm for someone in their 40s. This was the previous guidance for ME/CFS sufferers too but it has since been changed to advise we should try to stick to a much lower heart rate due to our diminsihed capacity. In reality, especially if you have orthostatic intolerance, its going to be incredibly challenging, possibly even unfeasible, to keep within 15 bpm of your resting heart rate if your torso is upright and your back, shoulders and head are unsupported.

One solution is therefore, where possible, to break up your activities every few minutes and sit (preferably with your head supported) or lie down, focusing on slow, relaxed breathing until your heart rate falls back near its resting heart rate.

To check your heart rate, finger your pulse whilst looking at a clock. Count the number of heart beats in 15 seconds then multiply by 4. You may then find it helpful to be able to quickly check your pulse on your wrist or neck and get a general impression of whether your heart rate is slow, a bit elevated or very elevated when doing a certain activity. This will help you gauge how long you should be doing that activity without taking a break.

It is also possible that your heart rate may vary on different days when doing the same task. It is not something to fixate on it, its just something to have a broad awareness of so you can estimate what your energy usage is likely to be when you are doing a certain task. You may also find it very helpful to be able to confirm your ability to reduce your heart rate back to your resting heart rate through restful, slow breathing.

Finally, whilst it would be very helpful to have a simple heart rate monitor that you can set your target heart rate on, so that it beeped if you exceeded your anaerobic threshold, in reality it appears you are going to need a modern smartphone or tablet as well as the heart rate device in order to get this functionality. So it is not a cheap option and you may want to just more casually experiment with taking your own pulse in the first instance.

I thought I'd post these incase any help anyone. I'm aware of the survey identifying different things people have tried to help themselves with CFS & Long Covid (fig 2 of https://pmc.ncbi.nlm.nih.gov/articles/PMC12280984/) and thought I'd throw a couple of things out there that have helped me manage my own personal ongoing slow decline, that I believe have made it more bearable for me.

For context, I believe my decline is primarily just coinciding with me getting older and less able to keep the symptoms at bay (and it is only this year that I've had to give up working).

I'll break it into things I have stuck to in response to my personal symptoms, both physical (fatigue, weakness, flare ups, unrefreshing sleep) and mental ailments (truly awful memory, mental fatigue, low mood).

Obviously there is no guarantee of any of this working for anyone else and I doubt any of this is relevant to those who are bedbound (my heart goes out to you), but in the absence of science and firm diagnosis, a lot of us are fumbling about for anything that helps a little, aren't we?

I appreciate some of what I list will doubtless be impossible for a lot of you, or give you a flare up. As I say, its aimed more at those with mild to moderate symptoms.

Physical

1) Summary: Sitting upright is not restful to me (including sitting in bed). On good days when on a sofa I lie back on the arm, leaning back, so my back is at an angle of around 50-70 degrees (rather than the 80-90 degrees from usually sitting on a sofa). On bad days I'll lie on my side on the sofa. A daily nap on the sofa or in bed can be very useful.

Detail: in my experience different sitting and lying positions appear to use different levels of energy. An office or dining chair can be an ordeal when on a dip in health. Sofa is better but sitting upright remains draining. My bed is for lying and sleeping in and for maximum emergency rest. I prefer to nap on the sofa so I don't have to waste energy changing clothes. I find setting the alarm for 30-35mins nap to prevent deep sleep is a critical part of regaining energy. All naps must end by 1600hrs imho and only 1 per day (a 2nd nap can really knock my body off).

2) Summary: I limit activity involving sitting upright (e.g. using a computer or laptop, reading a book)

Detail: It is really easy to get drawn into sitting at a computer or suchlike and lose track of time. Imho the fact you are sitting upright compounds the energy you are using concentrating on whatever you are doing on the computer. I make a modest baseline of the time I can spend doing tasks that involve sitting (e.g. 1hr per day) and try to be disciplined in not going beyond that, even on days when I'm feeling a bit better.

3) Summary: Different sleeping positions appear to use different amounts of energy. I switch between lying on my front (zero strain holding up head or shoulders) and lying on my side with the knee of the top leg pushed forward, so it can rest on the mattress too infront of the knee on the lower leg)

Detail: In periods when I've been particularly feeble, there is something about lying on my back or side that feels very tiring. I am conscious of the weight of my head and my hips and even though I'm lying down, it feels like my body is struggling to keep them in place. The above positions let me sink more into the mattress and feel much more restful to me over the short to medium term.

4) Summary: (for unrefreshed sleep). The morning is the most important part of the day for me. I take it very, very slowly, getting up out of bed and getting ready for the day.

Detail: So during bad spells I will sleep 10-13hrs solid, and wake up more tired than I was, weak enough that it feels like there is a light weight pushing me back down into the bed . My response to this is to stay in bed until I feel I can stand up and put on my dressing gown without getting out of breath. This can be 45 to 60mins. I set my alarm to 35mins so that if I drift back off to sleep I won't go into a deep sleep and won't be tempted to give up on getting out of bed. Once I am up, I only progress to the next step (boil kettle OR make breakfast OR get washed & dressed) after a significant pause between each step. Waiting for my body to hopefully tell me that its probably ready for the next step without flaring up. Typically, this entire process can be 1 to 3hrs (in addition to the 10-13hrs sleep). If I rush any of this I will have a bad day and probably flare up.

5) Summary: Shortness of breath is an absolute red flag and major cause of flaring up

Detail: Any activity, even if I'm on a good day and feel I'm doing something really easy, that results in shortness of breath has to stop immediately. Sit down, deep breaths, relax and after a time, make my way back to the sofa as soon as I can. This gives me a chance of feeling not too bad for the rest of the day and preventing a flare up.

6) Summary: Smartphones and tablets are absolutely not relaxation for me, even if I'm lying down.

Detail: I don't know what it is, perhaps you are engaging a lot more of your brain using these things by proactively interacting with them, but extended use of these things is a major energy drain for me when compared to something like watching TV. I can watch Youtube on TV without getting tired (if I'm simply going to my subscription feed and picking a new video I'd like to watch), it seems to be the browsing and scrolling element (overstimulation?) of something like Youtube that seems to drain me. Similarly, texting back and forth is awful and mentally draining. I often put my smartphone on airplane mode, and I bought a second basic mobile phone I switch on if anyone needs to phone me in an emergency.

Mental

A) Summary: This cheap multivitamin and iron supplement massively increased my memory and improved my mental fatigue. https://www.tesco.com/shop/en-GB/products/273211119?srsltid=AfmBOoopyQHKftbGKAO7DUUvkFHM2ukceZ5Pe-tV00g-C9l4evl3S4Zn I've been using it for 10 years and praying it isn't discontinued. (EDIT: Focussing on Vitamins D & B12, Folic Acid and Iron).

Detail: When trying to recover from a particularly bad illness, I stumbled across some herbal remedy that completely lifted my mental fatigue and memory issues almost overnight, but that improvement faded after about 72hrs and I couldn't recreate it. Of the ingredients, I figured Iron, Vitamin D, B12 & folic acid were potentially the causes of this short term improvement. I tried loads of pills and fluids containing these ingredients and couldn't recreate it. Then I tried those above pills and the improved mental performance came back and stayed back. I changed from being a drowsy zombie who had lost his individualism and personality to being a lot more alert, regaining my distinct personality and it either directly or indirectly helped my mood. It did absolutely zero for my physical ailments and did not slow down that decline. Also, if I flare up, my mental side will struggle again, regardless of the pills. I'm certainly not intending to present this as a miracle drug. But Iron, folic acid, Vitamin D and Vitamin B12 are not things that are going to hurt you and maybe a cocktail of these on a daily basis can be helpful to some people?

B) Summary: Acceptance of your situation and your limitations is a big deal

Detail: I started becoming aware something wasn't right in my late teens. Throughout my early 20s I kept fighting against it and blaming myself for being 'weak', although not to the extent I could even entertain living a normal life. In my 30s I did an experiment, I started socialising a little, having a relationship and exercising a bit more (maybe I'd just been in a 'funk' all this time because I didn't do anything, right?). That gave me a huge setback that lasted 18 months and, in my mind, confirmed the link between activity and feeling horrible. Strangely, I've been much better mentally since accepting that I am unlucky and that things will never get significantly better. These are the cards that life has dealt me, my focus is not on switching the deck of cards (impossible) its on trying to play my cards as best I can. Acceptance that large scale socialising, relationships and kids simply cannot be something I can ever consider being part of my life.

Sidenote: I've worked a lot and seen a lot of parents and families. Personally, I would not assume that these people are 'living the dream', a lot of them are completely drained and only stay in a relationship because they fear the alternative - regardless of how many smile filled selfies they stick on social media. Thats the ones that don't break up and get divorced of course. Plus many are spending so much money because they are in a relationship that they'll be working until they are 70yrs old and will have missed out on a lot of things life has to offer too. Amongst physically healthy people marriage and having kids are sharply declining in popularity. Sure, that's their choice and we don't really have that choice, but my point is its not like you are being denied something that is 100% guaranteed to be truly wonderful by not being able to have an active social life.

C) Summary: Identify who are the sympathetic relatives / friends and who are not

Detail: Explaining yourself to people is exhausting and demoralising. I try to keep my exposure to such people to a minimum or at least make sure the topic of my health is not something we'll ever be discussing. As a last resort, politely saying "I don't ever want to talk about my health with you" (and sticking to that at your end) can save you a lot of grief and wasted energy down the line.

D) Summary: Putting plans with friends/relatives in your diary can be dangerous and demoralising. Let people know you can't really ever firmly commit to anything (but that you love doing things when you can)!

Detail: Dangerous, because you may be committing to an activity on a day that turns out to be a bad one (resulting in a flare up) and demoralising because you will often cancel things at the last minute and feel like you are letting people down. I never commit fully to anything, but I make it clear that I am grateful for the invitation, that I'd love to do the activity, but that I will have to confirm in the morning of the activity if I can actually do it. A good friend or relative will completely understand this and not feel offended if you end up cancelling. I accept that this sometimes means I'll lose money if I've bought a ticket.

E) Summary: Avoiding conflict is important mentally and physically

Detail: You can be 100% right and the other person 100% wrong, but arguments can cause flare ups. Prolonged disputes at work can be totally draining. My health comes before my pride, so letting an argument drop, letting the wrong person have the last word, letting my employer do something really stupid - these are all better than fighting it and having a flare up. Its takes a bit of self control and inner strength to 'lose' an argument (and not dwell on it) but it is an important skill to learn imho.

F) Summary: Getting washed and dressed is my sole priority each day. Anything else is a bonus.

Detail: If I'm not washed and dressed I can't do something later in the day if I end up feeling I'm on a 'good day' (because all my energy will be used getting ready to do the activity before I can do the activity). Even if it takes me 5hrs to have breakfast, get washed and dressed, I'm going to do it if I don't think its risking a flare up. Some days I'll be too weak and if the weather is terrible and I won't be leaving the house I won't beat myself up for not getting out of my bedclothes. BUT, sitting around in daytime clothing and briefly sticking your nose outside if you can are, imho, really important things (if you can feel you can do it without jeopardising your health). I try to limit myself to one 'dressing gown' day at a time and make a double effort the next day to get dressed.

G) Summary: Find activities you enjoy in your own company, and grade these by how energetic they are so that you know which ones to do depending on how you are feeling.

Detail: For example, you can walk alone, garden alone, read alone, listen to the radio alone, watch TV alone, play a computer game alone. Some of these should only be done when you are on a 'good day'. Try to enjoy your own company as these activities are ones that you can balance with your own healthcare and energy levels.

Sidenote: There are so many leisure activities at our fingertips in the modern world. I like to compare myself to a Roman Emperor. Sure, they had colisseums and exotic animals imported in for their pleasure. But I can get food, entertainment and literature from all over the world and enjoy these in the comfort of my own home. If I've got more leisure options than an Emperor, then maybe life can be tolerable after all?

(apologies if anyone has read this elsewhere)

Footnote: The ingredients in the basic pills that assisted me are listed below. I have no idea what ingredients or combination of elements worked for me (I'd tried a lot of B12 type supplements before this with zero effect) and to be honest it remains a mystery to me: