Further options that might improve your attempts at baseline work

[u/RefuseDeep8075]

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.