To think ME/CFS recovery is very rare?

[savebuckbeak]

Been suffering for about a year now, since getting covid/some other virus. Ups and downs. Some good days, some bad. Wfh full-time but from home, and in a job I'm very familiar with so it's not overly tiring. Feeling pretty low and would love some recovery/major improvement stories. I can work on my laptop and potter about the house, but a 15 min gentle walk outside often just makes me have to get into bed.

I'm only 30 so it can be very lonely and isolating. No partner either.

This is interesting.

A highly respected psychiatrist colleague I worked with in the 1990s who had earned himself a good reputation for treating patients suffering from ME told me the prospects of recovery from ME were made considerably worse if the individual joined one of the self-help groups that were springing up at the time.

Both his own observation and formal research at the time showed that individuals who joined these groups almost never recovered while they remained active members, while patients who never joined, or left the group had good prospects for full recovery.

For this reason he discouraged his patients from joining these groups.

At the time, psychiatrists were not sure why this should be the case. Indeed, the expectation of both patients and some professionals was that the opposite should happen, that those in the self-help groups should enjoy better outcomes.

My colleague's theory was, belonging to a group of people who suffered similarly was comfortable and remaining part of that comfortable group became the most important consideration. That they possibly feared that recovery would make them ineligible for membership of a "club" that had become more important to them than being well again.

I'm not entirely convinced by my colleague's theory. While I believe it applies to some ME sufferers, it seems unlikely it would affect all, or even most in this way.

I keep my distance from the Fibro groups- the list of symptoms you could have, that might be part of it... it makes me navel gaze and notice things that otherwise wouldn't bother me. There's also a competitive misery element to it, that I'm afraid of falling foul of. I don't trust my body to behave, it may say 'that's a cool symptom, I'll try that!'.

I did really well with a graded exercise programme.
It was extremely low key- moving a jar from one side of the table to the other, walking my hands up a wall, standing then sitting.

We did what we could in 60seconds, subtracted 20%, and did that reduced amount daily for two weeks. Only then, if we were coping, did it increase.

No, in short. I pay £200 a month for the best meds I can get and even they aren't that effective

@AnwenDolly was it Professor Sharpe? He’s been very vocal about support groups. I think the problem he fails to recognise is people need these groups because they feel abandoned by traditional medicine.

I agree with you. Those views fit very uncomfortably with a “group hysteria” view. Surely there is an argument the people who don’t join the groups are the ones who are improving and so don’t feel the need?

I had ME from 16-19. I found a very unprocessed diet helped. I also, unknown, had endometriosis. I went on the pill at 19 and I do wonder how much was the endometriosis,

I was bedbound due to ME/CFS for 7 years.

100% recovered now, I run marathons regularly and have more energy than most friends/family, no lasting effects at all!

Every day I feel grateful and I never take my health for granted.

@TrackTrack So happy for you! That's amazing! Was your onset as a teenager?

No. His name was St John. He is retired now.

I think the fact that he was successfully treating ME at a time when the medical profession generally was struggling to make progress with the condition combined with his advice to his patients to avoid support groups might have affected his perception. Nevertheless, his observation was based on more formal research undertaken at the time as well as his own experience.

Lady Gaga had something similar and after working out her mental health issues she said she left the fatigue behind.

I haven't RTFT but if you haven't tried therapy it might be worth looking into.

Best of luck

So sorry to read of the challenges people with ME/CFS have been facing. A lot of symptoms overlap with long covid, and my husband has just started a program to address his. My friend’s husband has almost fully recovered from long covid (off work mostly for 15 months) now back at work full time. It is focused on the mental aspect and aims to reset parts of the brain that affect the auto immune system. Also healthy eating, no caffeine, early bedtime etc.
It is called the Gupta Program- written by someone who recovered from CFS and wanted to share this with others. Think he has a clinic in London too.

I had it for about 3 years following a severe flu, so mine was post-viral, which might make a difference. It ruined my life until I devoted a year to recovery and did nothing else except try to recover. I did recover and haven't relapsed, though I now go straight to bed for three days at the first sign of viral infection, just in case.

I suffered with ME for 8 years.

Eventually I stopped taking the medication because I felt it was making it worse. (Sertraline & amitriptyline)

Then I began walking, building up over the course of a year from half a mile a day to 20 miles a day by the end.

Then I felt well enough to work a 60 hour week and I've been fine ever since. Going on 6 years now.

I guess you have to figure out what works for you as there's so little understanding of it.

My advice would be listen to yourself and have a positive mental attitude. I never accepted doctors telling me I wouldn't get better.

Ultimately I have my life back again but I lost way too many years to it.

I've had CFS since 2009 after a viral illness. First 6 months were hell, then crawled up to being able to return to work part time. WFH during COVID enabled me to increase to full-time. DH does all cooking but I basically do everything else. Am always pretty shattered but supplements help, magnesium, vitamin D, occasional doses of

posted too soon! Occasional doses of ivermectin have helped with stomach and brain fog

I've had ME/CFS all my life!
There have been times when my symptoms are very mild and I live quite normally.
Other times are horrendous and I'm not living at all.

I was recommended a book, which from time to time I have to get out and re-read as my memory is so poor.

The fitter and stronger I make myself which is soooooooo dam hard and a constant struggle the easier my symptoms.

I redo the C25K all the time

drchatterjee.com/book/

I have had long covid for slightly over 2 years now. After a first year of very slow recovery set back by a second infection, I made great strides in the second year and am now about 90% back to normal. What helped me was time, reintroducing exercise (but being careful not to overdo it or, if I do, programming in a rest day the day after) and taking a shit ton of vitamins and food supplements in the hope that some stick.

My sister has CFS and has done for 6yrs now. First 2-3yrs was pretty much housebound, couldn't even put the bins out. She very very slowly started to increase her exercise, are a really healthy Mediterranean diet and rested as she needed to. She literally started with washing her tea mugs up instead of putting them in the dishwasher and then after 7-10 days added her breakfast plate as well and built up loads of tiny things before she went back to walking. Now she can do a pretty decent walk (over an hour) in the mid morning and is covering more distance. She's had lots of set backs but has learned when to rest and when to push on depending on how she's feeling which has definitely helped.

Really hope you make some progress as it's such a rubbish thing to suffer with! xx

I left a long covid support group last year because I just couldn't cope mentally with all the suffering and hopessness. I was just starting to physically recover at that point but leaving really helped my mental health (I still feel guilty about that).

Who prescribed it for you?
I’ve only ever heard of people on the internet taking it never anyone in real life.

I have on and off fatigue (it’s not ME) but probably autoimmune related due to a virus I had many years ago, all made made worse by LC. Really strangely getting my first vaccine gave me energy like I hadn’t had in years and I started to exercise. By the second vaccine so was doing amazingly.

I know drs try to get people with me/cfs to exercise and I always got angry at the expectation of being able to exercise if suffering fatigue. It was only because of being in lockdown that I was able to start small amounts of exercise and then sleep for two hours immediately afterwards but I have to admit that it built up my energy and tolerance levels over time and I was able to exercise for longer periods without experiencing fatigue and then the fatigue just wasn’t there anymore. I don’t think when drs prescribe pacing & exercise they’re being realistic because as soon as real life started up again (work/study/shopping /kids etc) I couldn’t devote the time to exercise and the necessary immediate recovery nap which combined took up many hours in a day.

I got covid again and the fatigue didn’t last as long but I did get a bad infection and flare in April which has left me seriously fatigued again for 3 months and I see no prospect of being able to exercise my way out of this right now. I’m in bed for 9 each night.

I think it is possible when all conditions are perfect to improve levels of energy but reaching perfect conditions is near impossible in modern life and does require extreme dedication but also adequate and sometimes prolonged periods of rest.

No need to feel guilty about putting your mental health first. Remaining in the group to the detriment of your health would not help the other members of the group anyway.

It was!

I had concurrent viral infections (shingles, glandular fever, flu) when I was 15. My immune system was very low due to trauma/stress at this age, and I didn't regain my health for another 7 years.

I was a member of a support group and became good friends with around 5 other sufferers of ME. 20 years later, I'm the only one fully recovered.

I find what the PP said about support groups to be interesting - for my friends I've seen that the ME has become part of their identity and they definitely have a 'victim' mindset which I don't think helps when you're trying to recover. The groups only strengthen this.

I think recovery depends on so many factors - what caused it in the first place, current stress levels, diet, supplements, personality, and how much you really do want to get better.

@savebuckbeak - that's an interesting question. I'd class myself on the mild edge of moderate at the moment, but mostly due to really good management and curtailing a lot of activities. So while it 'looks' like I'm reasonably unaffected, its because I don't do things that make me crash.

Before I learned to pace, it was probably much more definitively moderate. I think I can trace the CFS/ME to a particularly bad bout of the flu. Before children, I'd work a full day, then get home and sleep for 4-5 hours before getting up for a very late dinner, and then back to bed. I spent nearly every weekend lying down, so basically did nothing but work. If I did do something in the weekend or evening, I'd struggle through for months on end, and in general wasn't particular good/efficient at work.

After children, I couldn't get that extra nap each day, and I really felt it. I'd get through about a week at a time, then end up so ill by the next Tue/Wed I had to go off sick. I'd struggle back in as soon as I could, sometimes by Friday. But I basically was in a bit of daze all the time. A kind superior (not my direct line manager) basically insisted I go see the doctor before any HR processes took place - I had already gone and been dismissed for about 5 years straight, but I had moved, and went in this time armed with a list of what I couldn't do now that I could do 'before'. I got myself a diagnosis of CFS/ME and specialist nurse, and negotiated the half-day a week, and things turned around.

I'd probably have a much better quality of life if I could work a 50% contract, but we can't afford this.

@alpenguin I get it from dicksons pharmacy in Glasgow. They gave attached pharmacy prescribers.
They do telephone consults and send it to your house. Look up LDNrsearchtrust think you can find prescribers/pharmacies there.

@murmuration Thanks for your reply! Sounds like just cutting down to 4.5 days has helped you drastically? That's great. I do hope things continue to improve for you or that you can eventually find a way to manage even more rest.