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.
Yours sincerely,
Dr Speedy
Dear Dr. Speedy,… I know some ‘pain in the butt’ so called Dutch CFS- Experts to whom I would like to send your outstanding letter… I doubt that these doctors will ever ask the same question as Ms Groves did…
ReplyDeleteThank you for a brilliant attack on my behalf
ReplyDeleteand on behalf of all those who value integrity
Very, very well put!!! Thank you! :)
ReplyDeleteDear Dr. Speedy, With your permission I would like to add to the knowledge that is not forthcoming from docs. I asked a question at the London A.G.M., of the M.E. Assn., in 1985/86, (Friends Ho. Euston Rd).,after I had spoken with several hundred potential and confirmed M.E., victims in the Anglian Region of the U.K. Dr. David Smith, Medical Officer for the Assn., at that time, had sent out questionaires. Me: "How many of the people replying to your questions named Neuralgia/Neuritis as a symptom?" "Dr. Smith: "What do you mean by Neuralgia and Neuritis?" My reply: "Shooting pains stabbing up and down your limbs, like red-hot swords with barbed-wire wrapped round them, increasing in intensity until they were totally unendurable". Answer: "Thirty Percent". My muscle tissue, nerves, and tendons are permanently damaged, confirmed by muscle biopsy in 1979 and Thermal Imaging scan in 1982 & 1983, and I have had more than THIRTY YEARS of Idleness in which I have endeavoured to recover. Cancer drugs = "endrocrine therapy" have, for the last eight years, have also added to my pain and ill-health, and made my life a pain filled living hell. Onset: Sudden. Isolated Case. Woke Paralysed 1977,1978,1979,1981, and had also an enteric Virus, which was extremely unpleasant. I am on Facebook. You have my mail address. I have my medical Records. You can contact me if you wish for confirmation of any statement I make. No physician informed me of the damage confirmed by biopsy. Dr. J. Morgan-Hughes, National Neuro, London, did, when he diagnosed me in 1983. He was disgusted I was not informed. If I had known, I would have retired and sold my business in 1979. I did fall into bed and remained there for 7 months, as common sense dictated that pain as severe as that might damage my nerves. I was right. A severe fire in the kitchens forced me out of bed, as lived above my business premises. and now I have cancer.
ReplyDeleteDear Dr. Speedy, With your permission I would like to add to the knowledge that is not forthcoming from docs. I asked a question at the London A.G.M., of the M.E. Assn., in 1985/86, (Friends Ho. Euston Rd).,after I had spoken with several hundred potential and confirmed M.E., victims in the Anglian Region of the U.K. Dr. David Smith, Medical Officer for the Assn., at that time, had sent out questionaires. Me: "How many of the people replying to your questions named Neuralgia/Neuritis as a symptom?" "Dr. Smith: "What do you mean by Neuralgia and Neuritis?" My reply: "Shooting pains stabbing up and down your limbs, like red-hot swords with barbed-wire wrapped round them, increasing in intensity until they were totally unendurable". Answer: "Thirty Percent". My muscle tissue, nerves, and tendons are permanently damaged, confirmed by muscle biopsy in 1979 and Thermal Imaging scan in 1982 & 1983, and I have had more than THIRTY YEARS of Idleness in which I have endeavoured to recover. Cancer drugs = "endrocrine therapy" have, for the last eight years, have also added to my pain and ill-health, and made my life a pain filled living hell. Onset: Sudden. Isolated Case. Woke Paralysed 1977,1978,1979,1981, and had also an enteric Virus, which was extremely unpleasant. I am on Facebook. You have my mail address. I have my medical Records. You can contact me if you wish for confirmation of any statement I make. No physician informed me of the damage confirmed by biopsy. Dr. J. Morgan-Hughes, National Neuro, London, did, when he diagnosed me in 1983. He was disgusted I was not informed. If I had known, I would have retired and sold my business in 1979. I did fall into bed and remained there for 7 months, as common sense dictated that pain as severe as that might damage my nerves. I was right. A severe fire in the kitchens forced me out of bed, as lived above my business premises. and now I have cancer.
ReplyDeleteThia is so true, I have simply given up trying to explain to people, including doctors that the fatigue is only a small part of the problem, but the continuous pain is and weakness is the main one!
ReplyDeleteThankyou for your article. I have had ME for 2.5 years now and have experienced the same naivety from doctors. However, about 3 months ago i came across The Optimum Health Clinic(http://www.freedomfromme.co.uk/)who are a group of dedicated practioners who have all had ME and have helped thousands of people all around the world regain their health. They really understand the illness and have taught me so much. My health has dramatically improved since. You should check it out.
ReplyDeletei have had this for over a year now, seems to be getting worse, afraid - having to leave work to nap - barely can get out of bed in am, going tostore is huge issue - im only 38 and used to be very active - at gym 4-5 times/week, but now even short walks can bring on the illness - the body aches, headaches, neckache and fatigue. i knew it was virul when it first came on - cause of the aching - thats when they found ebv, kept hunting and found out i have low killer cells and now i have another virus too - anhow, no idea how to resstructure my life...good luck to you all...i don't have alot of money or family to care for me, so what is one supposed to do? thinking of sellikng everything and buying a trailer...so i can care for myself...i don't know. good luck...has anyone tried ahcc?
ReplyDelete