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.

Apologies if this has been mentioned already (have only read about half the thread) but I have a very good friend who has made effectively a full recovery using the Lightning Process. I have subsequently had two patients make dramatic improvements with the same.

Disclaimers:

1. It reads to me like total bunkum.
2. It's expensive.
3. The evidence base is not robust.

I would assume it was all a con, except my friend - who is as non-woo as they come - was bedbound, and is now working full time and running her own business around it.

A friend of a friend did it and said it really helped her. She was a bit cagey about talking about what it involved but sounded like group work online and positive thinking. She got back to work though and days out with her kids etc. So that is all fantastic.

Personally it sounds like well meant tosh to me and obviously it costs ££££. Maybe only worth doing if you have full faith in it. I thought maybe you could get the same benefits of being heard and forming a small community that understands your issues, from a patient support group potentially. I don’t know exactly what it involved though.

Since doing that course I have heard she’s had the same relapses that we all get and has moved to a much more part time job. I don’t know if she feels it helped or not or if she would recommend it. I absolutely totally get why people feel they will try anything that might help them to feel better though.

I had chronic fatigue badly between about 2001 and 2007 and I remember doing something a bit woo (and expensive). Maybe a precursor to this. There was no group work but it was about emotions and pathways. Releasing vs bottling things up. It did definitely help with my recovery, in a step change way. After I did the therapy - ahhh, it's come back to me, it was called Mickel Therapy - my lows were not as low.

Apologies for not having read the whole thread, I am too tired.

I believe that M.E/CF and post viral fatigue are similar, but two different conditions. Post viral fatigue is not permanent, it's common after glandular fever, or as it turns out covid. Equally as debilitating as M.E, but recoverable, usually after six months to a couple of years.

If someone recovers (not just a remission) from M.E it's PVF not M.E. M.E is just as permanent as MS.

Disclaimer, it's just my opinion I am not saying PVF is easy, I know it's very debilitating. Although I wish it was PVF I have, I have been ill for 12 years now, with a few periods of mild remission. I have spent 12 years researching the hell out of this illness and spending much time with fellow sufferers, so that's my reasoning behind it.

@Needsomeadvice33 Hi there, glad your symptoms have gone after discovering you were a coeliac! I had a basic coeliac test ordered by my GP, but it showed up as normal. Or are there more specialist tests that need to be done?

@Psm92 NICE CKS lists the other antibodies that can be tested as gps usually only test ttg iga but these can be normal in a small percentage of coeliacs. 23andme tests the genes, worth doing as if you don't have one of the 2 HLA gene varients then you can't have coeliac disease. Gold standard for diagnosis is villous atrophy on endoscopy and taking biopsies. The uk guidance changed though in that if certain antibodies are high enough you can be diagnosed on antibodies. It's all explained on NICE CKS.

@Psm92 you also have to be consuming gluten in the equivalent of 2 slices of bread per day minimum for 6 weeks prior to antibody testing. If your off gluten you can get a false negative blood test.

Thanks so much, @Needsomeadvice33. I'll ask my GP about this. Were you one of the people whose TTG IGA were normal?

Haven’t read the thread and massively out of date but I had ME/CFS between 1993-1998 - five years in total. I’d gone to university and promptly got influenza - I thought it was a week on the sofa, it was proper flu.

I’m now fully recovered - only lasting effect is I have poor circulation and get cold/ stay cold really easily. Otherwise no one believes me that I was that ill. At my worst, I had constant pain, couldn’t handle light or noise and 4 hours out of bed was a good day. I had a disabled badge for five years.

i now have a proper full time job, have studied on top of work, went to Nepal trekking.

Weirdly, the advice at the time was to do slightly more on bad days and rest on good days. I probably had graded exercise as it was supposed to be done - slightly more on bad days ( this could simply be brushing teeth on a really bad day) and slightly less on good days - just don’t go full out.

My mantra at the time was it will be better in three months … lot of plateaus and backtracks but it did get better.

Happy to discuss more if helpful.

I have fibro and CFS — I frequently say I could cope with one if I didn’t have the other. The two together , possibly with a thyroid problem as well, have almost brought my life to a standstill.
I take a raft of vitamins daily. The one that made a difference in energy levels was B1. I take a double dose daily. B vitamins are water soluble so safe to take at a higher dose.
I’ve tried every diet going. Consuming a lot of sugar definitely increases pain and I go gluten free as much as I can. Been tested negative for coeliac.

Pacing works ( mostly) I plan for a day out, don’t do too much the day before.

I think I had fibro as a child as I get one particular pain which I can remember from when I was about 6 or 7. And I think the fatigue has come and gone a few times during my lifetime. Heartily wish it’d disappear now, after 8 years straight I’ve had enough.

@Bookishandblondish this makes me feel like things may get better! Thaankyou soo much for sharing!!!

as the years were going on did you start to feel better ? Xx

I have CFS (diagnosed after cancer treatment but I think it started before that when I had hyperemesis). I consider myself nearly fully recovered now and feel I've tried EVERYTHING. Hoping I can return to work in a few months 🤞

The main thing for me was accepting that CFS is a physical disease but is caused by nervous system dysfunction and also accepting that recovery is possible. Then things that helped were brain training (repeatedly visualising being well essentially - can send links to free videos if helpful to anyone, I didn't pay to do DNRS or Gupta or anything just read about the concepts), vagus nerve stimulation via TENS machine, the Arc4Health machine, therapy (specifically Internal Family Systems therapy - I resisted this hard because was convinced therapy could not help a physical problem), and removing myself from many CFS social media groups.

Things that really didn't help were supplements (spent a small fortune) or diet.

In case it's useful for others I found these resources so helpful:
The Brain's Way of Healing book by Norman Doidge (blew my mind)
Raelan Agle's youtube channel - recovery stories
CFSRecovery youtube channel
CFSHealth youtube channel
Primal Trust instagram account

@ElkieMacjibe I'd love to see the videos if that's okay. I've been reading Breaking Free by Jan Rothney which is a great book, but haven't paid for her course as am on stat sick pay at the mo. I've actually got long covid not CFS but I think the principles are the same.

I'd be really interested in hearing more about your experience with the TENS machine, I have heard others mention it for vagal nerve stimulation but can't get my head round how it works.

Sure. So I alternated between these two each night before I went to sleep:

this one is a sort of mix of DNRS and Joe Dispenza. The bit about the healing centres is out there but if you suspend cynicism and go with it I think it's a great one

www.danielvanloosbroek.com/meditations/ the future self meditation on this page. This guy's website is amazing it's basically a free recovery course

Also at the beginning I just tried to do joyful things. Listening to music I love. Visualising past holidays. Watching beaches on youtube. I know some people are too severe for even that kind of stimulation though.

Re vagus nerve stuff, if you're on facebook the group A Vagus Adventure by Dawn Wiley has all the info you need on Tens machines and vagus nerve stimulation. I found her by chance but she was also recommended to me by my CFS consultant Dr Weir (she is his patient I think and has had amazing success in healing).

Good luck!

Thank you! Really helpful, I appreciate it

I found Gupta really helpful - I'm 4.5 years in and and in the last 6 months am finally seeing really significant improvement,which has coincided with doing the Gupta program. There is a free 28 day trial that gives you access to quite a bit of it, and then you can decide whether to go ahead with the full program.

I had severe post viral fatigue after a really bad flu years ago. I was sleeping 16-18 hours a day, had severe brain fog, couldn't work, could barely walk downstairs.

I cured it myself by taking a year off from everything. Which sounds daft as I wasn't doing much anyway but it meant I ditched the guilt of failing at uni and missing work deadlines. That guilt had been very draining and demoralising. I told DH I was too ill to do housework so he had to do it and the cooking, just for six months while I got well (I've barely cooked since - he discovered he loved it!) I gave up uni and work. I just rested. I took every vitamin and supplement I could possibly think might help. I did bed yoga and then 5 min yoga sessions, very slowly building up, and I did loads of affirmations and meditation. Bit by bit I got my energy and life back. After about 6 months I was walking an hour a day, doing yoga, helping at a food bank. After 9 months I was back in full time work. But it took total rest and total acceptance that I needed that much rest.

I know of three people with me....all have now returned to some form of normal living but it has taken years ...and I mean years. Only one of the three I say it still effects her day to day life. The other two are pretty close to as they were before but this is 20 years later. It's a horrible disease. I do have another friend who I suspect has it as she has long covid and really struggling now.

This is what one of my friends did....took her two years and lived with his parents but just slept and did nothing. Mn would say he was lazy but it followed glandular fever. He now working full time running his own business and employs alot of staff and has turned into amazing carer for his mum who supported him so well during those two years in his 20s. However I know he vvv careful still re his health. At his worse I visited him and he couldn't open his eyes.

Him not her. Sorry phone turned him into her!

I have this as well , long covid fatigue and weird pains in my arms. I’ve been like it for 18 months. I did recover 90% at one point after doing a rehab programme with LC clinic based on ME research which was the Plan, Pace & Prioritise approach. Then going back to a busy job set me back again.

So eliminating stress helps too. All the obvious self care stuff. I’m hoping I can recover again.

Apologies as I haven't read the whole thread.

I was diagnosed with M.E. by consultants as a child. I didn't go to secondary school properly I only managed two hours a day. I didn't have any big illness or anything that it came from, it just happened. I had occupational therapy for years and years. Consultants could do nothing for me just always said well you'll hopefully grow out of it and I thought what a load of rubbish. I'm really resentful that I lost my teen years to this awful disease.

However I am in my twenties and I would say only suffer mildly now. I was also diagnosed as autistic a few years ago which it think helped me understand more about myself and my energy and brain.

I'm now able to WFH 4 days a week, go out at the weekend to do normal hobbies, I also excerise doing ice skating weekly and in the summer also swimming. I still get tired quickly and experience post exertional malaise and many other M.E. symptoms but I am able to get on fairly well. I pace myself and keep my day off work in the week as a rest day and with that I live quite normally now. I probably do take life at a slower pace than maybe others do but I am happy with that.

I would say recovery is possible. You have to really look after yourself, no silly fads just eat well, sleep well, pace yourself and exercise within your means. My OT helped me to slowly work up to doing more and more gradually. I never thought I would ever be able to live a normal life but every day I am grateful that I have made improvements.

Thank you for those of you who have shared your experiences. As a parent of a teenager with severe M.E, it is reassuring to hear stories of recovery.

Thank you for this info. I’m working my way through this thread and going to look at some of these. I’ve had some success with similar techniques for fibromyalgia but now I have long covid and pretty much housebound. I think I have PEM and it’s “interesting” because I keep subconsciously visualising that I can do things and feel ok when I do but crash later that day or the next. I’m finding it soul destroying because I have a really strong feeling that I can do things (almost like a dream or hallucination) but starting to realise that I can’t.