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It was slowed down a bit by the pandemic but the likes of Ross Morris were very close to the MS society and there were various mind/ body schemes promoting meditation, sunshine, and diet, that sort of thing, gaining a lot of popularity among patients. There is a general belief in the population...

I found some of the reports of HBOT use in LC strange. With MS HBOT is used as a regular treatment not a one off bout so any good effect continuing after sessions stop did not seem likely. Healing after a broken bone or a wound does work very well with HBOT though so I wonder if the initial...

The problem with papers from 30 years ago was that the subjects were not required to have PEM. We can have no idea how many had problems with exertion so the research tells us nothing.

Thirty years of trials and no evidence of lasting benefit. There should be thousands of people out there who have recovered complete health in that time if it worked. I am beyond angry at money still being wasted on these studies and so called researchers making money from our suffering and...

They have moved beyond that, Sid. Now they claim that any proven and accepted physical disease can have a "functional overlay"

We tried their treatments - which one of us has not hoped that walking a bit further every day would be the cure? I want to be better precisely because I want to be able to walk as far as I used to do. But it did NOT WORK and made me WORSE. I would reject a pill if it had the same effect and...

I quote my answer to another thread (which I can't find now!)

My reading of this is that Stone and co are busy claiming that all the old BPS money cows are actually FND which is a physical manifestation of hysteria but the BPS are fighting back by claiming that FND is really psychosomatic so they can get authority (and grant money) back!

Of course, in recent years they have had the tools to show the damage of percussive injuries in the brain. If any war was likely to cause shaking in the brain it was WW1 with its constant bombardments.

In the days before CFS, the disease called ME was believed by patients and medical people who treated patients and researched the disease to be caused by a viral infection, which could have been subclinical, was neurological and where there was an abnormal response to exercise. This was not just...

Reward training maybe helps teach dogs how to behave but no amount of this sort of thing will make any difference to someone with autism. They are the way they are because their brains are different. It is just like the way ME kids were getting treated from the 1990s. Children whose bodies were...

About 30 years ago now, I needed a wheelchair and could only go out occasionally but I was getting down so I decided that I would plan for occasional treats. I remember going to some concerts in particular and some picnics in the park, about 1 every 4 weeks with a day in bed before and a few...

Feeling fatigue or tired all the time sucks all the pleasure out of life so it is a goods thing to try to get to the bottom of it. From our point of view the problem has always been that ME is not just the far end of the spectrum of fatigue. Once that is acknowledged and that a cure for fatigue...

When I had young children I was often exhausted in a way I do not experience anymore as I can rest long before it reaches that stage. One curious effect was I would find tears running down my face in what I believe was their excretory function as there was no emotion associated with it at all...

I find it disappointing that enteroviruses are lumped in with "other infections" with enteroviral infection being the infection type that led to ME being defined as a disease and EBV shown to not be significant in the Tahoe outbreak. My symptoms were overwhelmingly neurological in the early...

I have always been wary of the call to teach ME in medical schools. This sort of subreddit makes me feel it is still a gamble. In the past they would have taught the BPS views to our detriment. Today it might be different but I suspect that at best the two different viewpoints would be given...

That is a very important point and articulates something I have struggled to put into words. So important we should make sure that everyone who works with people with ME understand it. It may be as important in defining ME as PEM. Unlike other illnesses, ME lets you keep going until the damage...

Because the new variant causes eyes to get crusty it is worthwhile to wash hands really well and be very careful about touching door handles and suchlike.

In the early 80s ME research had a resurgence with the likes of Darrel Ho Yen, Dr Eleanor Bell and the Behans showing it was a disease that did not just happen in epidemics. ME was described rather than defined which I think was the usual at the time. When the BPS people suddenly took over...

Low blood sugar makes you feel warm, diabetics with really low levels can be drenched with sweat. As your levels drop the liver gets a signal to release stores to bring your blood level up to normal but there can be a delay in ME. Think about the way we have trouble heating up if we are cold. I...