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.

And I am so sorry to hear the impact of graded exercise on you .

I’ve heard about this quite a lot. People with long Covid often feel better after catching Covid.

Our bodies are so strange. I’ve seen CFS described as similar to human hibernation.

I want to reiterate, not to get into a fight, but to offer an additional viewpoint, that CBT and graded exercise can work for some people. For me, it helped me recover from housebound to completely healthy. Perhaps it depends on the therapist though, mine was very good.

There should be much more help affordable on the NHS. I'm very for those who are struggling.

They shouldn't be doing that these days. NICE guidelines now specifically say not to offer GET, and that CBT is not curative. There's still the massive problem of finding something that works, but at least this is a step in the direction of "first do no harm".

CBT can be very varying qualities too, my therapist included psychodynamic therapy that looked into the past and family dynamics as well as the present. Seeing how I had got to the "stuck patterns" that were reinforcing the illness, and seeing that it wasn't my fault, was key in enabling me to change them and reducing shame and fear.

No this has changed. Graded Exercise is no longer recommended.

No, my own life experience has not changed. I know that it can help some people as it was instrumental to my own recovery.

I meant it’s no longer recommended as it can make things worse.

NICE guidelines still include it as an option for some.

@InMySpareTime
I didn't get diagnosed with any other condition! That's the point I was trying to make. All my tests were normal, bloods normal and no measurable autoantibodies. You clearly know nothing about genetics. I had gene testing (privately) and worked with my SNPs and shitty varients (instead of against them) after doing copious amounts of research. This thread is infuriating. I listen to colleagues talk negatively on CFS and fibromyalgia patients and I don't have the same opinion but afew on here really fit the stereotype of angry, aggressive and mad at the world. Who's going to give someone with that attitude the time of day.

You're the only one being aggressive, please stop.
I'm glad you found a cure for your fatigue causing condition and got to the root of it by private means.
Please have a lovely day and leave me to mine.

I agree completely.

ME is a very real, physical illness, in a great deal of cases it's caused by a viral infection or many infections and high stress.

But mental health treatment like CBT and traditional therapy can be very helpful. Symptoms can be made worse with negative thought patterns. You can't 'think' yourself cured but in some cases taking a step away to see what might be reinforcing symptoms is a positive step to take.

Graded exercise is still recommended and helps a lot of people.

I'd urge anyone to read "the body keeps score" very interesting about how trauma affects the body.

Every single ME/CFS sufferer I know and have known, have significant trauma and stress in their history.

@TrackTrack I don't have a traumatic history or stress in my past or present. Hope that helps.

I'm very glad you haven't 💐

A life with ME/CFS is horrendous and I'm so grateful every day that I'm living an active, normal life, I'm proof that a full recovery is possible. I'm fitter and healthier than I was before being so chronically ill! Lots of hope to hold onto, that's the main thing.

@savebuckbeak my response may no longer be relevant but I saw your post and didn’t want to read and run as I remember feeling this way. Ended up with CFS after covid infection in December 2020, I was 29. 20 months of being off work and more or less bedridden and I never ever believed I would recover. Fast forward to today and I’m working full time, renovating the house we bought back in October and 23 weeks pregnant. A year ago I would never have even imagined any of those things would be possible. Energy levels are still worse than before, pregnancy has been quite tough in terms of believing my body can do it right, and I do often get anxious about overdoing it, but as you’ll know, feeling tired (normal) is not the same as feeling fatigue (abnormal) so I’m not complaining! Happy to discuss my recovery further if helpful, I tried everything under the sun and great cost, most of it no help at all but ended up getting there in the end ☺️

Asking anyone who has recovered: What do you put your recovery down to？What do you put your illness down to, or what do you believe you were suffering from？

My 23yo recovered suddenly and almost completely just over a year ago, immediately after coming off the contraceptive pill. They had heard anecdotally that coming off the pill or changing to a different formulation had helped some people, and thought it was worth a try. They had suggested this to a couple of their doctors, who had dismissed the idea, but DC then decided to try it anyway.

It wasn't the pill which had triggered the ME/CFS in the first place, however. They weren't on it when they first became ill at 15. We have no theories about what caused it other than the standard "postviral complications" idea. However, we don't remember them having had a virus. In fact, when they received their diagnosis at 18, the consultant observed that DC was a classic case, ticking every known CFS/ME symptom and pattern EXCEPT that as far as we can remember they hadn't had a virus before onset. I suppose they might have had something very mild which we didn't recall three years later.

Looking at LDN, has anyone gone through the prescription service with Roseway labs?

Thank you Saracen very happy to hear of a complete recovery for your DC