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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dangerous and premature words from this man.
Gerwyn:
It is as well that this person is evaluating scientific evidence with his gut because he has no qualifications in biomedical science in general and virology in particular. He may feel that his status as a part time GP qualifies him to evaluate whether a gammaretrovirus now found replicating in the blood of human beings can or cannot cause a neurological disease. Objectively, however, it clearly does not. If he bothered to consult experts in the field of MLV pathology they would be more than happy to assure him that they can! It is an extraordinary statement for a man who purports to be an advocate of people with a particular neurological disease to make. So a part time GP and a psychologist pronounce that XMRV, a gammaretrovirus, cannot cause a neurological disease. This is presumably why they are a part time GP and a psychologist. When the psychologist in question attains some biomedical knowledge, perhaps she will be in a position to understand the science. Many psychologists, unfortunately, do not understand science and this seems to be another typical example.
Hope123 -- I agree with you. One should ask what qualifications Gerwyn has. I believe he has a PhD or something in psychology. It would then seem Gerwyn does not have any qualifications to make any statements about XMRV either. But he does, and he attacks very knowledgeable people in the field of retrovirology and mounts a good number of personal attacks on these same people. You really can't take people like this too seriously.
It saddens me to see criticism of Charles Shepherd on the web forums.
It is easy to be an armchair critic. The MEA is a small charity without the power to force the changes through it would like to see. Our opponents are backed by powerful vested interests. I could not have kept going over all the years that Dr.Shepherd has been working for us - all the progress that has been achieved has been extremely hard won.
He has shown impressive stamina and tenacity.
There is much misinformation on the web about motives and actions which is impossible to correct, it seems to feed on itself.
My statement is not attacking the man, but the statement attributed to him.
Unless and until they can rigorously prove that the entire Science findings of Lombardi et al and their test are without any doubt, entirely false, then I will continue to say this: causation is not relevant. Infection however is.
If people with a diagnosis of CFS have a retrovirus, (irrespective of if or how it can be transmitted) then it must be treated. To suggest that antiretrovirals are not the answer for people currently infected with a retrovirus on a culture AND antibody test (which is used extensively elsewhere in medicine as a diagnostic tool), just because they cannot (and may not) be able to link it as the cause of CFS - is really disturbing, especially coming from a GP. On that logic, as bacterial and other passenger viruses have not shown to be the cause of CFS, then GPs should stop treating PWC for those as well.
Originally Posted by insearchof
My statement is not attacking the man, but the statement attributed to him.
In which case it might have helped if you hadn't written "Dangerous and premature words from this man" which does rather read as an attack on the person, not the words.
Usual practice is to achieve ‘proof’ of affirmation by repeated observation under all applicable conditions. It is the lack of repeated observation that denies proof of Lombardi et al
But no one ‘knows’ in any meaningful sense, whether the WPI test actually identifies anything let alone something that may be a pathogen
Even if in the very remote chance that XMRV is an active pathogen, there is no basis to argue for its role across a large part of the global M.E/CFS population. What Shepherd has written is wholly unremarkable, it’s simply a cautionary position accepted by 99% of medical professionals.
For more dangerous and premature words: Living With M.E
To clarify
I have no idea who all the personalities are in this. I know the position that Mr Sheperd holds, and I do not question his work in the field, because I have no idea about what he has and has not done. However, it is entirely irrelevant to my assessment of what he had to say - as quoted above, if indeed the quote can be attributed to him.
He is certainly entitled to his opinion, but I think his logic is seriously flawed (for the reasons I express) and his statement premature.
My statement is not attacking the man, but the statement attributed to him.
His ideas and comments, like those who are publishing in this field, are not immune to scrutiny, notwithstanding how much the man has done for the general cause of ME.
Nobody knows yet if XMRV causes ME/CFS. It's a promising lead that certainly needs to be investigated. People can have an educated guess either way and nobody should be attacked for either opinion.