PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS
We are currently drafting an open letter, to be co-signed by representatives of people with M.E. (Myalgic Encephalomyelitis), which will be sent to all media, especially those who covered the M.E. "death threats" story (first in the British Medical Journal, 22 June 2011 and then following the BBC Radio 4 "Today" programme, 29 July 2011), It will be a request for journalists to revisit it with a list of crucial unanswered questions, which may substantially alter public perception and suggest a completely different priority for future research. In advance, may I attempt a summary of two quite diametrically opposed views, which I hope will not be too oversimplified and sufficient to provide a fair understanding of the roots of this furore.
It has been an unseemly bar room brawl of flailing fists, since the first punches were thrown around 25 years ago because there are not merely two simple arguments, or adversaries but factions within factions and anarchic loose canons. At the risk of taking some more bruising, from all sides, which we condemn as both unpleasant and unhelpful to all, I shall attempt a summary:
Professor Simon Wessely and those of his school of thought and practice, appear to be saying that people, they have bundled together, with CFS/ME are being hostile to those researchers and practitioners, who are trying to help them; they should accept that there isn't necessarily a physical cause of their illness; their behaviour is likely to drive researchers away from the filed, they should take the orthodox treatments of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) and consider alternative and unproven radical treatments such as the Lightning Process.
Representatives of the M.E. Community say that the foundations of their work are fundamentally flawed because M.E. is a discrete neurological illness and, logically, cannot be the same as the CFS bundle of heterogeneous illnesses; therefore, any research work using these polluted samples, is invalid and unreliable; any conclusions should not be extrapolated to M.E. sufferers, who were probably not included in the trials; researchers are not independent while pharmaceutical and insurance companies fund their work; there is no evidence of researchers refusing grants to work elsewhere or remain unemployed; the recommended treatments they feel pressured to take are ineffective, or make a majority worse, the number remaining ill for decades has not been reduced and this monopoly accepted by successive governments, is impeding progress towards a cure not only for people with M.E. but other illnesses in the bundle.
I hope this right of reply will not be ignored or swept under the carpet but then, at a later stage, the same slur repeated on a majority of M.E. Sufferers who should not be tarred with one brush and as though no attempt had been made to establish a proper foundation for research into this dreadfully disabling illness.
Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org
We are currently drafting an open letter, to be co-signed by representatives of people with M.E. (Myalgic Encephalomyelitis), which will be sent to all media, especially those who covered the M.E. "death threats" story (first in the British Medical Journal, 22 June 2011 and then following the BBC Radio 4 "Today" programme, 29 July 2011), It will be a request for journalists to revisit it with a list of crucial unanswered questions, which may substantially alter public perception and suggest a completely different priority for future research. In advance, may I attempt a summary of two quite diametrically opposed views, which I hope will not be too oversimplified and sufficient to provide a fair understanding of the roots of this furore.
It has been an unseemly bar room brawl of flailing fists, since the first punches were thrown around 25 years ago because there are not merely two simple arguments, or adversaries but factions within factions and anarchic loose canons. At the risk of taking some more bruising, from all sides, which we condemn as both unpleasant and unhelpful to all, I shall attempt a summary:
Professor Simon Wessely and those of his school of thought and practice, appear to be saying that people, they have bundled together, with CFS/ME are being hostile to those researchers and practitioners, who are trying to help them; they should accept that there isn't necessarily a physical cause of their illness; their behaviour is likely to drive researchers away from the filed, they should take the orthodox treatments of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) and consider alternative and unproven radical treatments such as the Lightning Process.
Representatives of the M.E. Community say that the foundations of their work are fundamentally flawed because M.E. is a discrete neurological illness and, logically, cannot be the same as the CFS bundle of heterogeneous illnesses; therefore, any research work using these polluted samples, is invalid and unreliable; any conclusions should not be extrapolated to M.E. sufferers, who were probably not included in the trials; researchers are not independent while pharmaceutical and insurance companies fund their work; there is no evidence of researchers refusing grants to work elsewhere or remain unemployed; the recommended treatments they feel pressured to take are ineffective, or make a majority worse, the number remaining ill for decades has not been reduced and this monopoly accepted by successive governments, is impeding progress towards a cure not only for people with M.E. but other illnesses in the bundle.
I hope this right of reply will not be ignored or swept under the carpet but then, at a later stage, the same slur repeated on a majority of M.E. Sufferers who should not be tarred with one brush and as though no attempt had been made to establish a proper foundation for research into this dreadfully disabling illness.
Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org