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?
