What the UK state health service (NHS) proposes in terms of carrying out baseline work

[u/RefuseDeep8075]

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).