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Some Open Questions to Dr Shepherd & the UK ME Association.

Discussion in 'Action Alerts and Advocacy' started by Anglia ME Action (UK), Sep 30, 2010.

  1. currer

    currer Senior Member

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    Hi Mark,
    Thanks for youir long post. I remember when the name change was done and it was done to strengthen the name against criticism from the psychological school. Medical names have to be accurate descriptions of the condition and myelitis could not be defended as there was no hard evidence to prove inflammation. Dr Shepherd was one of the people who fought against a move from the psychologists at the time to change the name completely to chronic fatigue syndrome as it was said that that was the only name that could be medically defended given the absence of proven medical pathology. Otherwise we could have ended up as pure "chronic fatigue" as in America. I hope this explanation helps. I do not support the psychologists myself.
  2. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    I'm sorry but what the disease is called is not only vital it is the primary device by which those who seek to trivialise and distort the nature of the illness have done so much harm to patient welfare. When doctors who are supposed to advocate for patients (who have paid money to their organisation for that purpose) do something questionable it is our duty to call them to account and we would be extremely naive not to. We cannot bury our heads in the sand and hope everything will be alright. ME patients have been largely doing that for years and the consequences are dire.

    If Dr Shepherd has been lobbying the WHO re -opathy then we need to know. If an important study purporting to examine ME patients is actually examining something else and will seriously mislead then we need to know. We need to expose and examine such matters not bury our heads in the sand and mislabel it as unity of purpose. Wishful ignorance on such crucial matters is, I'm afraid, the opposite of "supporting each other".

    Kev Short.
    contact@angliameaction.org.uk
  3. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    I'm sorry but what the disease is called is not only vital it is the primary device by which those who seek to trivialise and distort the nature of the illness have done so much harm to patient welfare. When doctors who are supposed to advocate for patients (who have paid money to their organisation for that purpose) do something questionable it is our duty to call them to account and we would be extremely naive not to. We cannot bury our heads in the sand and hope everything will be alright. ME patients have been largely doing that for years and the consequences are dire.

    If Dr Shepherd has been lobbying the WHO re -opathy then we need to know. If an important study purporting to examine ME patients is actually examining something else and will seriously mislead then we need to know. We need to expose and examine such matters not bury our heads in the sand and mislabel it as unity of purpose. Wishful ignorance on such crucial matters is, I'm afraid, the opposite of "supporting each other".

    Kev Short.
    contact@angliameaction.org.uk
  4. Wildcat

    Wildcat Senior Member

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    Currer wrote: “Medical names have to be accurate descriptions of the condition”.

    No they don’t. There are endless examples of disease name that are not an accurate description of the disease, many diseases are named after the doctor/researcher who first indentified the diseases as a distinct medical entity for example). Chronic Fatigue Syndrome is not an accurate description of the disease. But there was no need to introduce yet another change (M-opathy) to an existing name that IS an accurate description of the disease, ie Myalgic Encephalomyelitis. There IS evidence of inflammation.


    Currer wrote:
    “I remember when the name change was done and it was done to strengthen the name against criticism from the psychological school. and myelitis could not be defended as there was no hard evidence to prove inflammation.”


    Many in the UK thought the Encephalopathy name change was, and remains, a red herring and was completely unnecessary, and served to further muddy the waters and in addition deprive us of the WHO ICD classification. The REAL name change issue was the unjustifiable introduction of the name CFS – “Chronic Fatigue Syndrome”.


    I also remember when Dr Shepherd proposed the name change to encelopathy and got the impression from what he wrote on the MEA website at the time that his arguments then were more based on his own illness, rather than the greater body of literature (and now post mortems) that supports the presence of inflammation.


    The argument that –opathy would make ME more acceptable to doctors – realistically, giving our UK doctors information on, and national guidelines based on, the several thousand pieces of bioresearch on ME would be the more Direct Route to making Myalgic Encephalomyelitis “more acceptable” to UK doctors.

    And realistically speaking, research follows the money – as it was pointed out at the 1st International Workshop on XMRV – despite retrovirologists being excited and interested enough in the XMRV/MLV/ME science to have diverted funds from other projects to investigate XMRV/MLVs etc in relation to ME – that interest will wane UNLESS there is substantial funding for them to actually do more research (research that they obviously want to do for science reasons).

    “The psychological school” (sometimes called ‘The Psychiatric Lobby’ or ‘The Psychosocial School’) are responsible for most of the disinformation about ME in the UK in the last 20 years, but their interests are VESTED Financial Interests (including Corporate financial interests as advisors to Health Insurance Companies) and have absolutely Nothing to do with any form of ‘medical fascination’ with ME.
  5. jace

    jace Off the fence

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    Charles Shepherd has earned several brownie points this morning with me, in interviews all over the UK media, clearly stating there is a link between a HIV type retrovirus called XMRV and ME ... Yay!

    Here's one interview, recorded by Knackered: http://rapidshare.com/files/423779608/Shep.wma
  6. Wildcat

    Wildcat Senior Member

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    Currer wrote: “Shepherd must be pretty convinced of the validity of the XMRV connection or he would not have publicised it.”



    Certain phrases in the ‘First anniversary of the ‘Science’ XMRV paper: the ME Association sums up the position so far’ online document on the MEA website, do not support the view that Dr Shepherd (Hon medical advisor to the MEA) is convinced of the validity of the XMRV connection:-



    ME Association October 7th:
    http://www.meassociation.org.uk/?p=2240

    “The summary is very cautious when it comes to drawing any firm conclusions about the role of retroviral infection in ME/CFS – as either a diagnostic marker, causative agent, or abnormality that requires treatment with antiviral medication.”


    “Given the current uncertainty, and conflicting research findings, it is therefore impossible to conclude that XMRV or MLVs are playing a significant role in either the cause, transmission, clinical assessment or management of ME/CFS”


    “WHAT CAN WE LEARN ABOUT THE ROLE OF INFECTION FROM OUTBREAKS OF ME/CFS?

    Unlike the retroviral infection HIV, ME/CFS is an illness that occurs both sporadically and in highly localised acute geographical outbreaks, often involving closed communities such as schools and hospitals, where there is no obvious evidence of bodily fluid transmission. This fact obviously questions the role of XMRV and MLVs as precipitating infections in the onset of the illness.
    In the pivotal Royal Free Hospital outbreak of ME back in 1955, more than 7% of a previously healthy population of doctors and nurses contracted an unknown infection at roughly the same time (the hospital had to close due to lack of staff). This fact would question the role of retroviral infection as a key predisposing factor if it only occurs in 7% of the population.”
  7. Mark

    Mark Acting CEO

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    No it wouldn't.

    If XMRV were already present in 7% of them and potentiated some other viral infection - like another MLVR - that acted in concert with XMRV, then XMRV would be the key predisposing factor.

    If XMRV were able to infect a virus, or to infect an environmental toxin like toxic mold (both scenarios are, in general, possible) and if XMRV could only succeed in infecting roughly 7% of the population who lack the relevant APOBEC-related genes to control XMRV, then XMRV would again be the key factor.

    If the health staff at Royal Free had all received an early vaccine that was infected, and for either of the reasons I've suggested only 7% of them were vulnerable to the effect, this again would make sense.

    I'm reminded of the endless bozo arguments about nature vs nurture that wound me up so much in younger years. Round and round in circles go the specialists, forever arguing against any theory on the basis that there is other evidence that suggests it can't be the whole truth. Decades we wait for somebody who hasn't been so blinded by specialisation that they can synthesise the various true observations made by people who've spent their careers arguing with each other instead of trying to figure out how they can both be right.

    That comment from the MEA strikes me as the reasoning of somebody who hasn't really thought intelligently about the possibilities. It's the sort of reasoning that really winds me up, because it just holds back progress.

    What the observations about Royal Free do suggest to me is that, fair enough, there are other co-factors involved. Whether genetic, whether a 2-strike theory with multiple MLRs, or whatever, it's clear that XMRV on its own is highly unlikely to tell the entire story of ME.

    The other thing that Royal Free suggests to me is the involvement of either vaccines or toxic mold. Why didn't the patients get sick? That points the finger straight at the question: what could the health staff possibly have been exposed to that the patients weren't? And the only answers that seem to arise are (1) some kind of environmental contamination in a "staff room" that they shared, or (2) some vaccine that they all received as health workers. A third possibility, (3) the condition can't infect people who are already sick, for some reason (eg their immune systems are active) can't be ruled out, but seems less likely to me.

    There is an answer to this question. When the answer is known it will be a simple answer. There will be 2 or 3 components to the story and that's it. Complexity arises out of simplicity, as every modern mathematician should understand very well. All those pretty fractals are generated from the very simplest of equations. ME will be no different, when we understand it. But arguing against one of the pieces in the puzzle because there have to be at least one or two more, just seems dense to me.

    For what it's worth, my guess is that the answer is: genetic vulnerabilities and multiple MLVs. XMRV in concert with other MLVs, which some people can't fight off. XMRV seems to be a keymaster, with access to most cells in the human body. It also has RNA transcription capability which could be used by other viruses in tandem. Hook it up with other MLVs that have other key pieces of the puzzle, and like a train engine, it could carry its coaches straight to the heart of the human immune system. I've even read somewhere that this is precisely how some of the cancer-causing MLV family are believed to work in mice. So it seems to be the first and most obvious hypothesis to me.

    Black and white reasoning, the perennial enemy...
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Totally agree with Mark's view (above) on the Royal Free comment. The MEA's assumption on this was not well thought out and that jumped out at me too.

    Having said that, as Jace &Currer say, I'm totally pleasantly astounded and v impressed with the MEA's work behind the scenes re the DoH and the blood ban, and at the BBC today. Dr Shepherd's comments about a likely viral infection in ME, his reference to HIV and pressing home the seriousness of potential infection of the blood supply does seem to indicate that some influential UK scientist has given a more than cautious nod in the direction of an XMRV link to ME in the UK. I don't suppose for a minute that he makes these statements in isolation without consultation with medical colleagues somewhere along the line.

    BBC Radio 4 only used a small snippet of his interview, but you can read his full interview on the ME Association website: www.meassociation.org.uk

    His comments there about the need for the blood ban seem slightly at odds with his v conservative and cautious XMRV update - I agree. They are not yet jumping in with both feet that's for sure.
  9. currer

    currer Senior Member

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    Hi everyone!
    It is just because Dr Shepherd is usually SO careful in what he says that I think the BBC statement significant - and for all the reasons you point out pictureofhealth
  10. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    btw - I was wrong about the length of Dr Shepherd's BBC Radio 4 interview (my comment above) from yesterday. The full interview can be heard 54 minutes into the programme (as indicated on the ME Association website - where there is also a transcript). Its just over 3 minutes long. But there is also a brief mention again later in the radio programme after the 2 hour mark.
    Apologies for the misleading info!

    Listening to Dr Shepherd's voice actually saying all these things - about the commonsense need to ban our blood donations as we are so ill, the similarities with HIV (he says this twice I think), the XMRV findings specifically being the most likely reason for the Dept of Health ban, regardless of what they might say the reasons are, and actually saying that he thinks the DoH are trying to be cautious & avoid public panic! - to a BBC reporter ... It is all we could ever hoped for, and more, from a charity representative in the UK and a doctor .. (apart from an actual cure that is)!
  11. Enid

    Enid Senior Member

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    Reason I left too. This clearly is Myalgic Encephelomyelitis (no opothy - hope spelling right) to those who know. Canadians spot on.
  12. Enid

    Enid Senior Member

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    I wih to add that Web search of the two definations shows a distinct difference. Encephalitis being direct viral invasion in the CNS involving the brain too. Encephalopathy is diffuse - smd (ie outside the brain). The use of the latter term in ME is incorrect. And recent virus discoveries back this up. Let's get the name right and move on.
  13. Dolphin

    Dolphin Senior Member

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    It's not Encephalitis (although occasionally journalists and others use that for the E in M.E.), it's Encephalomyelitis.
  14. Sean

    Sean Senior Member

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    Whatever Dr Shepherd's mistakes may have been over the many years he has been involved in this debate, he is unquestionably one of the good guys. I have great respect for him.
    Marty likes this.
  15. Enid

    Enid Senior Member

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    Enormous respect for the many ways already assisted should not blind to Science.
  16. Mark

    Mark Acting CEO

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    I do believe that Dr Shepherd is one of the good guys and has worked hard for us over many years. But at the same time I've seen several public comments of his which, in the detail, don't seem to me to do us any favours and don't seem logical or rigorous - such as the one about Royal Free which I've highlighted above. I've also raised the query why MEA isn't leading on a public awareness campaign/demo, and I'd highlight that since public awareness is so poor and the political funding situation still so terrible, that the ME charities have demonstrably failed in these respects, however hard they have been trying - and I do realise that it is an incredibly difficult job but they haven't reached out and engaged me in the fight as yet, for example.

    I'm disappointed that Dr Shepherd hasn't yet come on here to engage with all the UK patients on this thread. I had got the impression he and the MEA were aware of PR and were watching us: they've publicly commented on us twice now. Perhaps I, or somebody else, needs to ask them explicitly to discuss these issues here with us...another job to add to my list...
  17. Mark

    Mark Acting CEO

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    I also note that Dr Shepherd's response to Kevin didn't address a key question that he asked regarding the MEA's lobbying of the WHO regarding the name change. Kevin highlighted this earlier and I had noticed that question went unanswered too.
  18. Sean

    Sean Senior Member

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    Well, none of us are perfect, but on balance Dr Shepherd has been overwhelmingly a force for good. He was fighting hard for us before some of those here were even born.
    Marty likes this.
  19. Dolphin

    Dolphin Senior Member

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    I agree. I don't see queues of doctors lining up to do media interviews, write letters to journals, etc. I may not agree with him on the odd thing but I find I disagree with most if not virtually all doctors in the field on at least the odd thing.
  20. Dolphin

    Dolphin Senior Member

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    Charles did answer that on the list that I, Kevin and Charles (and many others) are on on the 4th of October:

    BTW, I'm not going to be a conduit of messages to Charles or the MEA. One can easily find e-mail addresses for them e.g. Charles posts to the valuable Co-Cure list, the MEA can be contacted through the website, etc.

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