I rested my way to recovery from long Covid. I urge others to do the same

[Boba]

being told there was nothing wrong with me was one of the most damaging parts. my body knew i was sick and i would naturally pace the times that i was able to convince myself of it. but it’s difficult, with all of the gaslighting. one begins to doubt that they are truly sick and the natural instinct to pace when you feel unwell vanishes. when i caved not to how my body felt but how others (doctors) told me to feel, that is when i got worse. it’s hard being a 19 year old that is sick standing up to the authority of many doctors and specialists and the public telling you that you are fine and healthy. you naturally start to distrust yourself and your illness

doctors telling us that nothing is wrong is almost certainly a big problem in many of the stories that i’ve heard

Everyone would listen, it's normal. You do trust them of course. They are angels in white Coates. I believed everything they said, therefore doubted. myself. I really thought I was mentally sick...2020 was the first time I had to deal with doctors as and adult. However they are not to blame because nobody teaches them differently. I'm so disappointed by this. I was such a happy person. My life was lovely. As yours and everybody else was for sure. I'm so sorry for everyone suffering from this.

 

[Boba]

Abs

I think that if we remove the word fatigue from when we visit docs then they might listen more - of course things need to change so that alarm bells (rather than eye rolls) ring for them when someone says fatigue. But I’m 100% sure when you say that word they stop listening.

Absolutely agree. Fatigue is misleading. I told them about muscle weakness in my legs, that didn't work either. It was not specific enough.

 

[dylemmaz]

Abs

Absolutely agree. Fatigue is misleading. I told them about muscle weakness in my legs, that didn't work either. It was not specific enough.

i told them it seemed like i had brain damage and they thought i was just insane

 

[xebex]

I'


I'm so sorry that you declined. Did you know about your illness while you were mild? The whole psychologisation made so many people worse. Not following virus related illnesses for decades is such a big shame...

I didn’t know what ME was when I first got sick no, and I improved from about 70% to 95% over about 9 months, so I could live a fairly normal life. After about 2 years of never fully recovering I did a lot of googling and realized it was mild ME but I was able to get on with life, my doc wasn’t helpful and I was able to make do. Then after about three more years living like that I started to decline, and in 2017 after a house Reno Idropped to 30% , luckily that only lasted about 1 year and I improved to about 40% but have been couch ridden for 2 years due to some kind of spinal instability, I’ve finally started to get some stability back and am now around 50%. In all this time I’ve had the same doc and he finally believes me. I think he can see I’m not stupid (he literally seemed to think that people with ME are stupid) but now trusts me when I ask for meds but, it’s taken along time to build that relationship and get him to atleast “get it” to some extent. In this time I was referred to a “specialist” who was useless.

 

[Boba]

i told them it seemed like i had brain damage and they thought i was just insane

You‘re not

 

[dylemmaz]

You‘re not

thanks. i realize that now. nueroinflammation is no joke in cfs. brain damage was a good explanation all along for a lot of my pain

 

[BrightCandle]

It is quite damning that NICE once again delayed the update to the ME/CFS guidelines and has pushed the problem to the winter, again. It is now at least 4 such pushes spanning a total of 3 years where they have consistently been delaying any adjustment to the guidelines. The reason is pretty clear, the ME/CFS community in the UK has all but wiped out anybody but the quack Psychologists and the NHS has given these insane people far too much power. PACE did a lot of damage as it put the final nail in the coffin for any other type of practice.

It is damning that despite all that patient criticism and all the international criticism that still now the guidance is to use GET/CBT, they don't even look for anything biological they just assume you are mentally ill. They have been doing the same thing to long haulers. At what point has their actions turned from the best medical practice known at the time to willfull torture? Because I think we definitely crossed that line in 2013 and I definitely think we crossed it the moment that draft ME guidance was published and there is no justification for this with long haulers at all, there is international recognition that it makes them worse. But saying that the CFS clinic I (was forced) spoke to in October had no idea there was draft guidance nor did it care, I could have GET or CBT, I was bed bound at the time and my skin looked like death. These people are ill in the head.

 

[Boba]

It is such a shame. Once you are biased like that it needs a straightforward definition top down. As long as this is not happening the sheep will follow the shepherd.

 

[Hip]

Eve Dr John Chia, who is a fundamental believer in the viral theory of ME/CFS, as opposed to the psychological theory, says he does prescribe cautious exercise to certain ME/CFS patients, I suspect the mild patients who are close to remission. I am not sure if that exercise actually helps, but for pretty mild patients it probably does not do any harm.

But coerced exercise is well known to be devastating to severe ME/CFS patients, who often get much worse as a result of being convinced by dubious medical professionals to do exercise.

There are some terrible stories of young severe ME/CFS patients in the UK being forcibly taken from loving parents, and taken into hospital, and then coerced into exercise. This usually makes these severe patients much worse.

 

[Husband of]

Thing is surely they have PVFS if rest gets them well? Even if it takes 12 months. ME is - you aggressively pace, you relentlessly rest - it makes zero difference. In my case it helped my dizziness and the pervasive muscle fatigue that took over every cell in my body gradually got better until I just had fatigue that recovered if I sat still.

The first 10 months was me resting and never ever improving the fatigue in my muscles. The next 12 months was me being able to recover muscle fatigue if I rested for time.

I was taking siberian ginseng throughout the whole period anyway which I am still convinced has some sort of immune modulating effect.

How do you know an illness has progressed from pvfs to me/cfs?

 

[Pyrrhus]

How do you know an illness has progressed from pvfs to me/cfs?

The distinction between post-viral fatigue syndrome (PVFS) and ME has never been clearly delineated.

The best we know is that PVFS is probably just a short-term version of ME that lasts 6-18 months.

Hope this helps.

 

[godlovesatrier]

Yes what Pyrrhus said. My doctor was adamant it was 6 months and if it went on longer and medical history indicated possible ME like problems as mine did. Then you start a diagnosis of exclusion. This is why ME is a bit of a waste bucket diagnosis because it's diagnosed by exclusion. So for me I didn't get diagnosed until I'd had PVFS twice over a ten year period. So who's to say I didn't already have ME by age 20 for example.