Does XMRV cause ME?

[Ana]

Xxxxxxxxxx

 

[VillageLife]

...does xmrv cause illness?

we dont know yet.

but for the many 1,000s who are now XMRV positive, its very hard to believe it isn't making us sick!

 

[insearchof]

Ana

Thanks for this post and I agree with some of the observations raised on Sheperd/his comments.

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.

Dangerous and premature words from this man.

 

[garcia]

Dangerous and premature words from this man.

I agree completely insearchof. Charles Shepherd is scientific advisor to the ME Association but has no actual scientific qualifications (other than a medical degree). He is a simple gp who is way out of his depth. The only people he talks to are UK government employees with a vested interested to keep ME within the realms of a psychological disease. The last thing they want is to have to shell out thousands of pounds per patient in drug treatment costs.

I don't understand how these people can claim that a retrovirus may be involved, yet categorically state with the next breath that it can not be causal!

 

[Hope123]

And this is why I don't go onto the other forum. It gets too personal; discussing info is one thing -- attacking the other person is another thing.

Dr. Shepherd is entitled to his opinion and having it be out there means he knows the risk of making his opinions known. People know what his qualifications are and they can agree or disagree with his opinions knowing his background. What I disagree with vehemently is Gerwyn's personal attacks on people. What are his qualifications?

And even if he was an MD/ CEO/ PhD/ General/ MP/ former triathlete combined, I'd still have no respect for this type of character/ behavior. He chased down Kurt; I don't agree with many of Kurt's positions but it is easy to attack people anonymously with no accountability. I don't see Gerwyn publicly advocating for or researching ME/CFS on the scale of Dr. Shepherd. People like him I have no respect for.

As for "simple" GPs, may I remind people that some of the most dedicated talented docs involved in treating/ researching this illness are generalists, including Peterson, Bell, and Bateman? Also, the most arrogant people are usually setting themselves up for a fall.

 

[Undisclosed]

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.

The first post on this thread was also posted on ProHealth by the administrator of the forum of which you speak. I would guess that Ana is in fact Wildaisy.

 

[SOC]

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.

I agree, too. I suspected a lack of hard science publication experience based on a variety of comments. For some reason, certain people take an arrogant and aggressive attitude, and use of fancy words as evidence of intelligence and knowledge. Anyone who knows many published scientific researchers knows that the vast majority are NOT like that.

You won't find me over there, either, Hope.

 

[currer]

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.
I dare say I would not agree with Dr Shepherd about everything, but I feel we should try to give people more credit for their achievements. Criticism is too easy.

 

[SOC]

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.

I, too, think it's sad, currer. All I can say is: consider the source.

Later:
Can we perhaps find a way to stop reposting or cross-posting personal attacks from people who don't choose to post here. They have a plenty big enough audience at their own forum.

 

[insearchof]

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.

 

[In Vitro Infidelium]

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.

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.

That is a reversal of common scientific practice – proving falsity is almost always impossible because the negative has multiple, or even infinite probabilities. 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, one can argue over the reasons for the lack of independently repeated observation (researcher incompetence, worldwide conspiracy, non existence of entity etc) but science isn’t going to accept Lombardi et al until there is substantial independently repeated observation of XMRV in blood from CFS patients.

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.

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 a test can identify a retrovirus, there is no reason for automatic ‘treatment’, treatment is for a disease not for presence of an organism. The human body is host to billions of organisms, most of which have no or only limited capacity to cause disease, it is only the presence of those very few organisms that are identified as being (often only in very specific circumstances) pathogenic, that are treated against. Speculative treatment as part of process of research, may be justified; unrestrained prescription of drugs for use against an unproven cause would be grossly irresponsible.

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

 

[insearchof]

Hello IVI

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.

I refer to my last post. I maintain the words are both premature and dangerous. You IVI, can choose to read into it, what ever you like.

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

Yes, proof of affirmation by repeated observation etc, another way of saying what I said. But the fat lady, isnt even close to warming up in the wings yet IVI. And until she sings, the argument of infection in a reasonably substantial number of CFS patient remains on the table, much to the distaste of the negative camp.

But no one ‘knows’ in any meaningful sense, whether the WPI test actually identifies anything let alone something that may be a pathogen

This has been addressed ad nauseum all over this forum and others and I dont have the time, energy or inclination to bore every one here with the counter position or add to the sites current demands for space on its servers. If your late to the proceedings and are not familiar with the arguments, may I suggest you use the search function? This is reminiscent of the Towers/Welcome Trust position - so try searching for that. Or pehaps your already familiar with it?

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.

Your statements is as premature as the one I commented on:'' Even if there is a remote chance that XMRV is an active pathogen'' the science is just warming up and yet here you are questioning pathogenisis and raising remoteness,: premature.

He maintains that CFS is not caused by XMRV and therefore anti retrovirals are not the answer.

Bacterial infections are not the cause of CFS either, but are treated.

Yes, bacteria causes infection, is a disease and justifies treatment on current scientific premises.

XMRV has not found to cause disease in humans, but has been shown to do so in other mammals.

Clinical trials employing anti retroviral’s and patients subsequent response to lower levels of XMRV might go a long way to bridging the gap. Stronger calls for this from patient advocates must be made.

To say, however, and what’s more on the basis of a gut feeling, that XMRV science will not prove to be the cause of CFS –is as others have pointed out – unscientific.

To say this whilst science is progressing, is premature.

To go further and then add when science is unsettled and one is referencing nothing more than ones gut feeling, that anti retrovirals are therefore not the answer, is premature and dangerous.

It is dangerous, because it is not based on settled science and statements of this nature – that go unchallenged, may have the effect of closing down the discussion – and that is especially dangerous and premature - not only for the health of thousands of chronically ill persons with CFS - but for a substantial proportion of the healthy populace who may also be infected.

I doubt that 99% of the medical profession would step out and make such a statement of the ilk he did, when they know science in this area remains unsettled. It is one thing to advise caution in the use of anti retro viral drugs, - but that can be said quite clearly.
The problem here is it appears that he went beyond that.

For more dangerous and premature words: Living With M.E

How on earth is this relevant?

 

[heapsreal]

i think the arguement over if xmrv is the cause is mute, we known that cfsers have immune dysfunctions going on, maybe xmrv is a co-infection??? but we need lots of funding to sort through all this crap. Theres no doubt that theres some sort of immune problems going on, we just have to find them, for some xmrv maybe their problem , for others ebv etc etc, Stanford initiative seems open to all these infections and immune dysfunctions, we need to move on and keep looking, but i dont mean stop looking ay xmrv/mlvs though. As for dangers of retro drugs, i think they are over exadurated or else they wouldnt give them to HIV patients who seem to live a longer quality of life these days, of course there will b side effects but even the big depsensing of ad's like prozac have there problems. I think whatever treatment u wish to use is a personal choice and hopefully the docs out there explain the pros and cons of these different therapies.

cheers!!!

cheers!!!

 

[SOC]

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.

As far as I'm concerned, scrutinizing his statements is fine, I just disagree with attacking him rather than his statements. I happen to agree with your comments about the statement attributed to Dr Shepard.

 

[Dx Revision Watch]

I stopped posting on this forum a while back, but it needs to be corrected that Dr Charles Shepherd did not qualify as a GP, nor does he have NHS specialist or consultant status.

On the GMC Register he is registered as "Registered with a licence to practice". He is not, and never has been on the GMC's GP Register or on the GMC's Specialist Register. After qualifying and working in SHO positions in several NHS hospitals, he states in his book that he contracted an encephalitis illness following contracting chicken pox. It is understood that although he went on to begin his GP training period he did not continue with it and so did not qualify as a GP and went from SHO positions in hospitals, to non completion of the GP training period, and thence into limited private practice.

I hope this clarifies. I advised Gerwyn of a few days ago of his misconception and I hope that he and others have corrected his original posting wherever it may have been posted.

The book Living with ME was published in 1999 and has not been updated since.

 

[Dx Revision Watch]

According to his public profile, Gerwyn states that he was engaged in a doctorate in counselling psychology when illness struck and is now working towards chartered psychologist status.

He has also written on this forum that he has a law degree.

 

[Cloud]

Dr Shepard made it clear this is just his opinion (gut feeling).....he wasn't attempting to push his opinion off as science, and therefore, I see no need to attack the man's credibility. We often hear "gut feelings" from some of our best docs (especially when asked like that).

I became aware of Dr Shepard's work while researching the Hep B Vaccine connection to ME/CFS. My limited experience with his work suggests to me that he is on our side.

 

[fla]

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.

 

[Mark]

Regarding Gerwyn's qualifications, I think he has said that he also has some sort of a degree in medicine or biological sciences (annoyingly I can't remember the details), and has worked as a lab technician in areas relevant to retrovirology. Much of his perspective on the retrovirology comes from the perspective of a lab tech, I think, which may well explain why he has some practical insights that may not be obvious to those with a more theoretical perspective.

Lab techs may not be taken terribly seriously by more highly qualified professionals, but likely they should be treated with rather more respect than they are - especially given that Gerwyn has been studying this specific area of science privately for a long time now. By now, he probably knows far more about the science of XMRV than someone who isn't a specialist in this area, which may explain why some of his comments have been described as a mixture of extremely acute observations together with some (alleged) misunderstandings of the underlying science. I'm inclined to think that, as a hands-on scientist, he's likely to have an important perspective on things.

I also think that his consistent emphasis on the importance to the scientific method of precise replication is a crucial point, and it's surprising that so many more senior scientists seem to have reached a level where they don't appear to think that fundamental principle is important any more.

Anyway, in general Gerwyn's comments (on the science) are vastly more intelligent and astute than some of the ridiculous non-sequitors we hear regularly from much more senior scientists in the press - you don't need to know anything at all about the science to spot the illogicalities and unjustified conclusions in the abstracts of most of the 0/0 studies...

 

[Mark]

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.

So simply stated, and oh so true! Thanks fla!