So someone gets worse with your treatment but that is not any reason to rethink your treatment since it must be the patient that is at fault because you are right and no amount of evidence will change your mind.
So patients don't want things to be called functional because they think it is treated as less real and because they are prejudiced against it.
This highlights the real problem which is that True Believers just can't even envisage that they could be wrong when they decide something is...
I remember reading that someone checked the BPS papers using the same algorithm (I think it is called) that they use to check that pharma companies are not hiding studies that show no benefit.
They said that there was no way you could have such glowing results in every paper.
They talk about brain fog but they do not define it anywhere. Years ago, one of the ME researchers in the US said that ME patients had similar problems as patients with AIDS dementia and the symptom should be called ME dementia. We also have deficits in working memory and a lack of...
The simple fact is that tinnitus is an unpleasant nuisance, but not a serious disease. By his own description he overreacted very badly so thinking about it differently helped him. That is the way it works with a lot of things in life but it has no relationship with a disease like ME where the...
I don't mind them offering alternatives to painkillers as long as they are an addition to pain relief medication. It is being left in agony and called an addict because they don't work that is the problem.
For many years, I did not understand ME and especially did not fully realise about PEM as we think of it now. I had young children and no help looking after them during the day as my husband was out at work and things like shops closed by the time he got home.
Now I know I was running on...
I agree completely. I was thinking about FND too and they all have the same flaw. They say that stress or childhood adversity causes disease and symptoms in the body as if that was an answer, but everyone has the same stress reactions. Everyone trembles or feels nauseous, or has to rush to the...
I have never found psychological stress bad for my ME. I have had nights when I could not sleep for worry, but that is universal with extreme stress even if you don't have ME.
My symptoms depend on how much I do whether life is good or bad.
I think you are completely correct, but so is Kitty. People with ME have been caught in this catch-22 for years. No one will believe you are ill unless a doctor says so but honest doctors, the ones who do not sell snake oil for their own benefit, say there is nothing they can do. Try getting PIP...
Andy, I have that experience too. It is impossible to believe that anyone with any sense can look at these papers and not see the flaws so you think it must be your own interpretation that is wrong.
I wonder if that is how they get away with it. These papers often have lots of jargon and...
Childhood stress as a cause of disease should be easy to prove or disprove. Some children grow up in situations of intense stress. Rates of FM, ME and FND should be very, very high in refugees for instance. People are very willing to help others so it should not be difficult to find subjects...
The misdiagnosis in this case was picked up because a neurodegenerative disease becomes hard to miss. It is not so much that misdiagnoses are rare, more that other established diseases can be ignored for years and complex chronic illnesses like ME can be ignored forever.
ME is not like rheumatoid arthritis or similar diseases. Even something like migraine which is diagnosed symptomatically can't be compared because of the variability of problems in ME. Ramsay actually felt that variability was a key diagnostic feature of ME. He said it could vary by the hour...
I can't follow these things very well anymore, but has it not been suggested that the problem in ME is that gene expression gets changed to cope with a viral infection but then gets stuck like that instead of going back to its preinfection state when the virus has gone.
Another fascinating insight into the complex interactions of parasites with our basic biochemistry. It really does make the BPS views look like a child's version of biology.
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