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A problem I have is that when I am talking to medical professionals I sound much, much better than I really am. It is completely involuntary. I call it being full of adrenalin though I don't know if that is what it is. It is the same effect as when I visit my grandchildren or go shopping (rare...

Ponstan was the name of an NSAID which they used for period pains and abdominal pains as it probably helped with endometriosis. It was also fantastic for toothache! They stopped prescribing it years ago.

There has to be a plausible theory linking the symptoms to the postulated cause and that is the bit where FND falls down. They simply claim the brain is plastic which just pushes any explanation further back it is not a cause just a fact of biology. Everyone's brain is plastic why do only some...

That is very interesting. It explains what I have always thought - that onset has to be sudden for a disease like ME, at one point the damage is not there the next minute it is, but the effects of that damage can take a good while to become apparent. It also explains why many people who feel...

Sean, that is so true. I a truly afraid for my family and all those people going blindly on ignoring this until it finally gets them. We are seeing that with longcovid, all these medical people who are on the other side of table. That statement could be made about any disease. The unspoken...

My mother became very fatigued and anxious after a bout of flu and was reassured that it was PVS for 3 months until she collapsed and they discovered she had a small cell, very aggressive cancer. It would have made no difference to the outcome and was probably better for her, but fatigue is not...

My grandson had undiagnosed autism and became severely anxious about mixing with people. CBT did help him quite a lot. He was disgusted with himself that something that was so easy for everyone else was hard for him and he knew the distress he was causing to the people he loved so he was...

They spend all their time doing overviews which simply push the fact that FND is a proper medical diagnosis like RA or MS. Repetition designed to make other medical people accept it. Their positive signs, like the drooping lip or the hip abductor test do not fit with any emotional input...

"Bothered" is a weasel word. It does not acknowledge that a symptom is really happening, it is a word used in everyday language as a trivial description, and a thing can bother one person while another barely notices. They can also be outraged that anyone could possibly believe that they meant...

The neurological symptoms are not typical of PVS. PEM is a shorthand way of describing something that is going on and is not very accurate. A recent guideline for doctors says that they should ask their patients to watch out for a relationship between what they do and the symptoms they get. I...

The situation is worse than that. Due to their stunning success reducing fatigue in CFS (!) the BPS brigade, including some of our well known names, have made great inroads into the world of RA and MS, probably others I don't now about. Rona Moss Morris is very friendly with the MS Association...

I have mentioned before that my husband had PVS after flu in the days before we knew anything about ME and never had any suspicion we could have the same illness. It was completely different in character to anything I had experienced. Basically he was constantly exhausted, pale, and ill looking...

There is more money available now than there was when everyone called it ME and agreed on what it was. If any money had been available for biomedical research in the first decades after CFS (when the problems started caused by the medical world, not the patients) we would have the knowledge to...

Eminence based medicine.

I have no problem with doctors asking if someone is having problems in life or any problems with their mental health. It is when they do not accept the answer that I get angry. Too often saying "no" is taken to mean the patient is in denial so is "expressing emotional problems as physical symptoms".

In the original FND papers Jon Stone said that an important clue was a woman who had an attentive husband come with her.

It bears repeating that doctors treating myotonic dystrophy complain that it is missed too often by neurology departments. When someone obviously has the disease the whole family has the gene test and all too often it is found that older members have the disease but it was dismissed by...

Samuel, the problem is that most of your questions have no answers because there is not enough known about ME. The differences in people with ME means it is likely that something is broken in ME which can cause random problems through many systems so there may never be a single answer. The main...

Surely the only point to categorizing patients is to work out which treatments lead to recovery in each type. Since CBT is the answer to everything it hardly seems worth the effort.

The only way to make the BPS model more scientific is to find develop a testable theory of how it impacts the body. The FND work is trying to do that though it is full of gaps.