disqus_thread @ Protesters have got it all wrong on ME
http://www.telegraph.co.uk/health/8641007/Protesters-have-got-it-all-wrong-on-ME.html#comment-301216576
Citygirlme
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I'm not in the slightest bit surprised that you recovered using a psychological therapy Amanda. That's because you did not have ME. you had a psychological problem instead.
Having belonged to ME groups on the internet since they were invented I'm struck time and time again by the number of people who join them claiming to have ME who have psychological problems instead.
They join our ME groups after self or superficial diagnosis and then do nothing to even try to get themselves better, while the real ME patients are desperately trying every remedy whether it be a psychological treatment or an experimental one in the hope that they will improve.
You would have stood out like a sore thumb on the group you belonged to and were probably the loudest to complain if someone asked you if you actually had a proper diagnosis or what treatments you were trying.
No one with ME sits on a sofa complaining for years we fight against the disease - we are the ones trying all the treatments and putting our last drop of energy into finding something that works.
A psychological problem leaves you on the sofa complaining and doing nothing - not ME.
Having belonged to ME groups on the internet since they were invented I'm struck time and time again by the number of people who join them claiming to have ME who have psychological problems instead.
They join our ME groups after self or superficial diagnosis and then do nothing to even try to get themselves better, while the real ME patients are desperately trying every remedy whether it be a psychological treatment or an experimental one in the hope that they will improve.
You would have stood out like a sore thumb on the group you belonged to and were probably the loudest to complain if someone asked you if you actually had a proper diagnosis or what treatments you were trying.
No one with ME sits on a sofa complaining for years we fight against the disease - we are the ones trying all the treatments and putting our last drop of energy into finding something that works.
A psychological problem leaves you on the sofa complaining and doing nothing - not ME.
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: RESEARCH shows: ME is caused by an oncogenic virus
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: It is testament to the complexity of Max Pemberton's brain that the mind is capable of ignoring almost 5000 research papers of evidence that ME is a severely disabling neurological disease
"A psychological problem leaves you on the sofa complaining and doing nothing - not ME."
ReplyDeleteLike anyone with ME I'm also frustrated at the focus psychological treatments and aetiology and the devastating pittance that is spent on biomedical research.
However, the final comment here helps nobody. I'd imagine there are many people with psychological problems who have battled hard to face them.
It rather fuels accusations of mental health stigma that have been levelled at us of late.
I fervently agree that the ME community is full of heartened doers, none of whom will go gently into that good night. People who are the very anti-thesis of malingerer or capitulater. Those who push through pain and suffering and make themselves ill because they love and care for those around them. Those who will force themselves out and suffer for weeks because they wanted an old friend to feel loved on their birthday.
Those who support somatisation can play a wider game. I'm sure they can take malingering out of the equation entirely if need be. Any kind of politically incorrect attitude towards mental health is quickly utilised to discredit opponents.
In turn that becomes the focus of discussion, instead of the more compelling issues.
Like the alarming variance in diagnostic criteria. There is a massively compelling case that the people being described as suffering from ME are heterogeneous group of patients and that many researchers are remiss when they fail to separate by criteria in all ME studies.
I'd urge patients everywhere to dump the battle from last month. It's a distraction, an anger magnet.
Lets get back to publicising the ME-ICC, the WPI, the IiME and all that other good stuff.
The smoking gun of an unimpeachable biomedical ME aetiology is the only thing that is going to end this battle.