Dear Ms Groves, (deputy editor BMJ and editor in chief BMJ Open)
Last night you tweeted : "What's it like living with CFS/ME? And should all researchers include post-exertional fatigue in its definition? http://t.co/zL3JynP #bmj"
Well as a doctor, who has been bedridden with ME for many many years and who is totally dependent on others, I think I'm in a unique position to answer your questions.
What I knew about ME before I fell ill and the reality of the illness are two completely different things.
I thought that ME was about being tired, and that these people were cured with CBT and GET. Add in some personality disorders, exercise phobia, child abuse etc as that is what you read as a doctor about ME/CFS in the medical journals.
I have since learnt that most doctors haven't got a clue what ME is like, they even know a lot less than what I knew before I fell ill, which they hide behind incredible hostility and very unprofessional behaviour towards patients with ME.
So let me just shortly explain what ME is. ME stands for Myalgic Encephalomyelitis, the disease described by Dr. Melvin Ramsay, the infectious disease specialist, after the outbreak in 1955 in the Royal Free Hospital in London.
The M stands for severe muscle pain, severe musclefatigue, and most of all an abnormally delayed muscle recovery after doing trivial things.
In my case, that means, if I walk to the toilet and back, it takes almost 24 hours before I have enough muscle power/strength to walk the same distance again. So it means I don't have enough muscle strength/power to walk, to sit or stand, which means that I have now been bedridden 24/7 and dependent on others for many many years.
The E stands for horrible brain problems, like cognitive dysfunction, i.e., problems with information processing like making a telephone call, reading or watching TV. It also means hypersensitivity to noise and light, severe headaches, severe dizziness, tinnitus etc.
The reason why most doctors don't know anything about ME or if they think they do it's completely wrong, is because the CDC and the CBT psychiatrists first changed the name to Chronic Fatigue Syndrome and then they changed the criteria. How did they do that? Well they simply took the word musclefatigue, crossed out the word muscle and left out all other muscle problems including the main characteristic of ME, the abnormally delayed muscle recovery after doing trivial things, as well.
The brain symptoms were obviously crossed out as well.
So the only thing left was just fatigue, and they called these the Oxford criteria and to make sure that there would be absolutely no one with ME selected by using the Oxford criteria they specifically excluded anybody with any neurological symptoms. So a six year old can see that the CBT psychiatrists have deliberately selected people without ME yet labelled them as ME/CFS as we have just recently seen again in the PACE trial.
My eye fell on the following from the BMJ editorial that was just published: "nothing will improve while campaigners believe only drug treatments based on biological cause will help and doctors believe patients who won’t try GET or CBT are untreatable."
I'm afraid, nothing could be further from the truth. Most patients are so desperate to get better from this severely disabling neurological disease that they will try almost anything, including CBT and GET. The trouble is, CBT is at best completely useless, as I found out by doing 12 sessions of CBT and GET is not only very dangerous for people with ME, but many of us have had severe relapses caused by this so-called treatment to the point that many of us, including myself, have been made bedridden 24/7 by GET. Anybody who knows anything about ME knows that GET equals torture for people with ME.
And doctors shouldn't torture patients as you know.
Now the recent PACE trial declared GET safe, but they used the Oxford criteria, which as mentioned above, selects people with fatigue caused by depression or burnout and excludes ME patients. So GET is not only torture for ME patients, it also directly contravenes the do no harm principle of the GMC.
Now I understand that as I am a doctor with ME, you might not believe my account of GET, so let's just have a look at some recent reviews of CBT and GET for ME. But may I remind you first that PACE trial's Prof White has always claimed that these treatments cure at least 25% of people with ME and the Dutch/Belgian CBT doctors have claimed for years that they cure 70%.
Prof White's PACE trial found that no one gets cured by CBT and GET.
The review by Prof Maes showed that these treatments made people worse,
a recent Spanish review again showed that these treatments made people worse
and then there is the recent review of these treatments in the five reference centres in Belgium. The Belgian Prof who set up these centres, is part of the we cure 70% group, yet this review showed again that these treatments make ME patients worse.
The Belgium Prof responded by saying that that is because the expectations of the patients were too high. If a surgeon uses a treatment and claims that he cures 70%, because he has selected his group by using Oxford like criteria, so not selecting the patients he should have selected, and then several reviews show that patients are made worse, then obviously his treatment would be abandoned. The same should obviously finally happen with CBT and GET for ME.
So to answer your question, the main characteristic of ME, the abnormally delayed muscle recovery after doing trivial things is essential in any ME research, just like a broken bone is essential if you do research into broken bones. If you do research into broken bones with people who don't have a broken bone, but say they do, then your research is obviously seriously flawed to put it mildly. And the same applies to ME research on patients who don't have (the abnormally delayed muscle recovery after doing trivial things, the main characteristic of) ME.