I tried to explain these recent FND papers to my husband and it was impossible. What exactly do they think is the cause of FND? Do they think that people become sick for the secondary gains like the BPS people, or the Freudian subconscious is seeking gratification? Is it the case that the brain...
Another example of using CFS as a name for the symptom of fatigue rather than the highly disabling, serious, systemic disease it is.
Ignore all the neurological problems, the dysautonomia, the broken aerobic metabolism and you can make it up as you go along.
They do not give any description of how functional dystonias differ from other dystonias beyond their own decision to class certain aspects of dystonia as functional.
They decide that sudden onset fixed dystonia means it is functional because other dystonias do not have this but this just...
They have got this upside down. I have a few other medical conditions now as I age and I would love to be able to go to the equivalent of S4ME for them to get in depth information and help to understand the latest research.
I had pfizer 14th February. I was exhausted because of the effort of going for it and had a bit of a sore arm and a headache for a few days but have been fine, or at least same as usual, since then.
The BPS people made much of ME/CFS being a different sort of disease. One leading proponent said it occupied a region between mental and physical illness as if it was something part plant part animal. More and more diseases are getting pulled into this hole by being classified as MUS.
Yet the...
His talking about how he obsessed about sugar after eating cake is telling because that is what the BPS accuse us of doing when we talk from experience. Even if some people with ME can empathise with that happening occasionally, it is not what we mean when we know from experience that we will...
There is a lot that can be done for ME patients right this minute which would be useful for longcovid as well.
Believe the patient and take what they are experiencing seriously, especially do not assume it is caused by depression or anxiety even if they are depressed and anxious about their...
I get hunger as a symptom which is as unrelenting as a pain. It is obviously part of my PEM and like other things happens with no rhyme nor reason. I know from experience that eating does not relieve it so it is something to endure. Sometimes I crack and have a bit of dry toast which doesn't...
The trials on GET use the Chalder Fatigue scale which is so bad that it is usual for many participants to be at or near the maximum score at baseline. This means that there is no way of recording that anyone got worse. 20 out of 20 at the beginning is still 20/20 at the end so no harms.
There...
Looking at the Dallas bed rest study, the volunteers had 3 weeks extreme bed rest with no load bearing at all followed by 8 weeks intensive exercise training so going from one extreme to the other.
Maybe the results would have been better if they reflected real life where there is a very...
Reading about POTS it seems to me that it is not a single disease, but something that is the end point of different things that are going wrong in the body and so considering it as one process could lead to inappropriate treatments for many people.
Off the top of my head, there could be...
I have never read anything that convinced me the placebo effect exists but an assault on the body like making a hole and removing blood could induce repair systems that help with ME in the passing.
There is also an effect, which I think of as adrenalin induced but may be caused by something...
A bit behind in my reading but flu was always considered to have a prolonged convalescence in some people. The common feeling in my working class family in the 50s/60s was that you should take things easy after flu so you recovered better. How this has been forgotten by educated people amazes...
I have not read the article but a breakdown in homeostasis is one of the most severe of my symptoms and one that has been present right from the start.
Nothing reacts quick enough. I am cold but don't heat up for ages, then I can't cool down for instance.
ME/CFS is what we have when the symptoms go on for years and years without resolving which is exactly what she is saying longcovid is.
Exactly the way we have known for years that some people have an extended recovery from an infection but then return to normal whereas others stay sick.
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