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Wessely honoured with a knighthood for his work for GWS and ME

Discussion in 'General ME/CFS News' started by Countrygirl, Dec 29, 2012.

  1. Kati

    Kati Patient in training

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    Signed. It deserves its own thread.
  2. Firestormm

    Firestormm Content Team Lead

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    Marlene, I was following this debate on Invest in ME Facebook the other day. Unless I am mistaken this was a death of one 'Denise' or 'Niessie' - is that correct? Sorry to ask but my comments requesting this information was never answered on Facebook and there appears to have been some discrepancy in what actually happened in this case or in ascertaining the full story.

    Perhaps down to re-interpretation or translation - I really do not know. Denise was apparently being treated also by Dr DeMeileir. And she had had several mammograms. But if it's not the same person as was mentioned last year in this 'article' from Speedy - then please correct me and I will delete my comment.

    Comment from IiME Facebook:

    Of course this could also be wrong.


    "Dr Speedy" 'article' from 2011:

    http://niceguidelines.blogspot.de/2011/07/dutch-doctors-blunder-by-dismissing.html

    That could be wrong also.

    This does nothing of course to detract from the point that someone with our diagnosis has died and that the cancer had not only gone unnoticed but had seemingly spread to a point that treatment was not an option. Indeed it may have been only after death that the extent of the cancer was found.

    But as I said on Facebook, and in addition to that comment above; DeMeileir was also 'treating' this patient and presumably he is a doctor also and one who had not dismissed her ME....

    The importance of ensuring that ME is not the only thing looked for or attributed to a cause for symptoms is so vitally important. It is deplorable when other conditions are missed whatever the contributing factors might have been.

    I know of people with ME who are so afraid of their doctor's attitudes that they no longer meet with them regularly. One person hasn't been to see their GP for several years.

    Only through education and engagement can we ever hope to change this - for patients and for physicians. But that's easy to say and rather lame when someone has died.

    Edit: I see we are talking about the same person.

    Thanks for posting further details. I am afraid I would need a translation. I never took to languages unfortunately - but one other thing I regret.

    Fire.
  3. Valentijn

    Valentijn Activity Level: 3

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    Just to clarify, are you suggesting that her Belgian ME specialist should have been consulted regarding her non-ME symptoms and been able to diagnose cancer? Or somehow get her Dutch insurance to pay for further investigation?
  4. currer

    currer Senior Member

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    I am not surprised by this latest sign of official backing for Dr Wesseley.

    This has been known about since the early 1990s, when Dr Wessely was moved into the Defence department. It was the Falklands veterans who were first concerned about his attitude to post conflict sickness and disability. They had watched his actions with regard to ME at that time and knew what was in store for them.

    This predates even the Gulf War.

    Make no mistake, there is something about ME which makes our political masters unwilling to have it investigated, and this attitude is a deliberate, longstanding, policy.
    Wildcat and Shell like this.
  5. Firestormm

    Firestormm Content Team Lead

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    In part yes. The part I would suggest is that a specialist in ME should also be able/willing to liaise with a patient's own doctor and indicate (or have the knowledge to say) 'This could be more than ME'. I think that is a reasonable proposition, Val, don't you?

    *I think it is reasonable to have expected De Meileir to have known about the cancer scans at least and to have an understanding of the patient's history as well as symptoms etc. but then again I am not sure what the policy is in this regard as he is a private 'specialist'. I would think though that Denise had at least discussed her concerns with him and that he would have taken notice of them.

    Of course I cannot comment on the insurance angle - I don't know what relevance this has to the discussion. I also do not know how De Meileir came to be involved or if he diagnosed ME or feels that ME and Cancer are co-morbities (I am aware that some do feel the incidence is suggestive of this and also in connection with 'XMRV' as it was then).

    There are more details/opinions/perspectives on the IiME thread. No doubt there are more also elsewhere. I am NOT suggesting that Denise put her symptoms down to ME exclusively or that she was in some way wholly to blame.

    Things can and do get missed regardless of one's diagnosis. There are often many factors involved in things being missed. It is rarely I would suggest a straightforward picture.

    How many people with ME also have Autonomic Dysfunction that is currently undiagnosed and may, if treated, enable them to return to some semblance of normality?

    If Denise had been treated for her cancer - had that cancer been spotted - who is to say if her symptoms attributed at least in part to ME might not have also been resolved?

    And yes, her GP could have been wrong. He could have been negligent. If there was a case - if the family felt this was so - I would imagine there will be a complaint followed/or in tandem with a prosecution.

    I don't know if there has been one. Details are scant.

    Edit: *Added paragraph.
  6. currer

    currer Senior Member

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    To add to my previous post about the Falklands war (in 1982 - so you can see how far back this goes) the veteran who contacted me had been poisoned by organophosphate pesticides. He had been part of a team that had to spray the battlefield with pesticides (because of all the dead bodies lying about) and had suffered long term consequences and was housebound/bedbound as a result.

    The Falklands veterans were well aware that their disability pensions were at risk.
    Wildcat and SilverbladeTE like this.
  7. Wildcat

    Wildcat Senior Member

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    .
    Currer wrote: "I am not surprised by this latest sign of official backing for Dr Wesseley.

    This has been known about since the early 1990s, when Dr Wessely was moved into the Defence department. It was the Falklands veterans who were first concerned about his attitude to post conflict sickness and disability. They had watched his actions with regard to ME at that time and knew what was in store for them.

    This predates even the Gulf War....."

    .

    .################################################################################################

    .



    Thanks very much for that, Currer. If you are up to it, could you elaborate on the views of Falklands vets about Prof Wessely's move into advising the MOD, with any references. If you are not up to it I understand, it is very demanding locating and posting evidence.

    .
    I posted some evidence from the 2004 Gulf War Illness Lloyd Inquiry that may interest you - Professor Haley's evidence, on Post 44 of this thread.

    BW
    .
  8. Wildcat

    Wildcat Senior Member

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    Thanks, Currer. Our posts crossed. xxxx
  9. barbc56

    barbc56 Senior Member

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    Yes. How tragic. Any doctor who sees a patient with these symptoms should know enough to refer that person to another doctor unless he/she can do a mammogram.

    So is this a fallout from using treatments that are not science based. We simply don't know.

    Such a sad story. My condolences to her family and friends.

    Barb C.:>)
  10. Jarod

    Jarod Senior Member

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    planet earth
    When I first started using the forums a couple years ago, I felt the doctors and people did not know. However, I now realize everybody in research does know. Many patients do know.

    Probably just need one good thread to summerize the politics(Dark Knights etc) Keep the thread pinned right at the top of the forum, and move on.

    Progress will advance better/faster with everybody being aware of the Vampyroteuthis infernalis. Unfortunately, we get stuck on these threads because some forget or some newcomers have not learned.

    I believe things are going to work out ok. We are reaching critical public awareness(in politics in general), and that will force change.
    currer and SilverbladeTE like this.
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Currer
    yup, like the british nuclear, bio and chemical warfare test VICTIMS, not "veterans": victims, because our own government experimented on them without their permission or full informed consent, against the Nuremberg Code
    And they fought tooth and nail to deny deny until they nearly all died off!

    More reason why I want Westminster *destroyed*, it is a sickness pretending to be a Democracy.
    (note, I mean politically destroyed, criminal investigations etc, not blowing it up! though we cna debate levelling the building to the ground afterwards when it's empty :p)


    And on whetehr or not we should deal with such things, or be pacifists, well...I'm all for pacifism and forgiveness when appropriate, for whole bunch of reasons, but when serious abuse, murder, you name it goes on..NO, you *STOP IT*.
    Even if only by calling the cops, or raising your voice, otherwise you condone what goes on.
    You cannot give scumbags an inch, becuase they'll take the whole mile.
    would get modded out if Post it directly but hey, I always thought this was a damn good point! :p
    http://uk.imdb.com/title/tt0066999/quotes?qt=qt0335148
  12. Wildcat

    Wildcat Senior Member

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    ################################################################################################


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    "Fallout from alternative treatments" ??? ??? ???

    .
    Why on earth throw in that diversion, Barb?

    .

    Oh, I see. Thats a Bad Science Forum meme.


    .
    When the Bad Science Forum members start investigating and critiquing the Lightning Process - then we will believe that their purpose is really to promote good science and expose "woo" health scams.

    .
    Roy S, Shell and currer like this.
  13. currer

    currer Senior Member

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    When I first started using the forums a couple years ago, I felt the doctors and people did not know. However, I now realize everybody in research does know. Many patients do know.

    Probably just need one good thread to summerize the politics(Dark Knights etc) Keep the thread pinned right at the top of the forum, and move on.

    Progress will only advance by everybody being aware of the Vampyroteuthis infernalis. Unfortunately, we get stuck on these threads because some forget or some newcomers have not learned.

    I believe things are going to work out ok. We are reaching critical public awareness, and that will force change.


    Yep, Jarod, I agree with you.

    This is the beauty of the internet - free exchange of information at all levels. Those who know most are frequently disempowered - but the internet can change this.

    The reason I dont post much now is because the discussions are repetitive - the situation with regard to ME has been perpetuated by political motivation for over a generation now. - the same abuses continue, in the same way.

    In the early 1990s, I was naiive enough to believe that ignorance at the highest political levels was the problem.
    It is not.
    They know exactly what they are doing, and why.
    What more is there to discuss?
    Wildcat and Jarod like this.
  14. adreno

    adreno 3% neanderthal

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    And what do you speculate that something is?
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    I believe that is why the "Establishment" is "shoring up the leaking dykes" by such actions as we've seen, to prevent the inevitable tsunami, the backlash once the cistern is full and the merde hits the wind turbine, so they "stiffen the supports" to make sure no one runs for the hills or turns "Queen's Evidence"....
    we've seen it before actually MANY times
    "The Prime Minister has full confidence and support for the minister, despite being caught performing immoral acts in public with a lhama, three call girls and rentboys dressed as nuns in rubber, high levels of viagra and illegal drugs in his system, and with £50,000 in cash in his pockets, we're sure there is perfectly good explanation!
    We are pleased to announce his recent elevation to the peerage, which has nothing to do with shutting his mouth and putting him out to grass, not at all!" ;)
    currer likes this.
  16. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    the knowledge or merely the fear that it is linked to vaccines, organophosphates or illegal biowarfare tests on civilians.
    lot of stuff went on that was merely about covering up POTENTIAL issues, as I keep saying, it's all about control, sedating the "Sheeple", not allowing ANY change, nothing to buck the smooth gravy train for our Elites.

    • So, just the fear that they may have say,
      a link to vaccines, see test issues. maybe in reality merely that as an "infectious/immunological response" it may trigger ME as any serious infection might, for all we know, or could be due to contaminated vaccien batches.
    • or that the some of the insurance ocmpanies didn't want ot pay out (snd they may have cushy deals/suupport for politicla parties etc),
    • or fearing an ally (USA's) or own (never heard of Porton Down?) bioweapon got loose, again, could have set off wheels within wheels

    they may not even know WHY they are doing it, merely that "SO LET IT BE WRITTEN, SO LET IT BE DONE!": when their master's order, they obey.

    During the 50's and 60s a huge number of "new" or unusual diseases burst onto the scene, now, fair percentage of such will be due to advances in being finally able to identify them, and the icnrease in air travel, but...
    USA/Uk had massive biowarfare programs of primarily *non-lethal agents*, hard fact, they had serious accidents, lunatic and criminal testings, hard fact.

    Organophosphates are linked ot M.E. as well, and we've ben spraying those horrendous chemicals on our crops for decades, this is how Countess of Marr got involved as she was poisoned by such.

    Etc etc
    Maybe they had a specific reason, maybe they didn't, maybe they just feared the trouble and wanted it "gone" as they are paranoid about "being seen to be 100% in charge at all times"...we may never know, indeed THEY may not know any more themselves! The Byzantine bullshit that goes on in Whitehall is insane.
  17. adreno

    adreno 3% neanderthal

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    Hip likes this.
  18. Hip

    Hip Senior Member

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    I think the main and most important reason that ME/CFS remains grossly under-researched is that scientists generally find ME/CFS a very boring disease to investigate. Even my own doctor intimated to me that "nobody in the medical profession seems at all interested in ME/CFS".

    Advancement in any field of science always occurs because someone takes a passionate and deep interest in the field. In science, you are not generally ordered by some authority to study something; you study a field because you are attracted to it, because it fascinates you personally.

    But unfortunately, very few scientists seem to find ME/CFS of any interest in its own right, and it is rare to find talented researchers chose ME/CFS as the focus of their career.

    Often the few good clinicians and scientists that do get deeply involved in ME/CFS research are those whom this disease has touched personally, or has touched a close family member, such Dr John Chia, whose son Andrew developed ME/CFS; or Drs Cheney and Peterson, who I believe caught the Incline Village ME/CFS virus themselves.


    I actually had an idea about writing a technical booklet summarizing the (to me) endlessly fascinating mental symptoms of ME/CFS, and the known biochemical pathophysiologies of ME/CFS, but written in such as way as to demonstrate to young researchers that the mysteries of ME/CFS are deeply intriguing and profoundly thought provoking.

    My idea is that if you present the myriad facets of ME/CFS in a way that grabs the attention and engages the fascination of scientists, you might start getting more talented researchers dedicating their lives and energies into unravelling the mysteries of ME/CFS.
  19. Valentijn

    Valentijn Activity Level: 3

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    Based on her online journal, she was advocating extensively for her GP to order another mammogram, and he refused. My Dutch isn't perfect, but I'm pretty sure she said in 2010 the doctor told her "maybe another mammogram in two years". A year later, she finally got diagnosed with breast cancer.

    Dutch doctors do not care what experts from other countries are saying. Especially if they have heard about how they should ignore "medically unexplained symptoms" and are seeing an ME patient. If the Dutch GP does not order the mammogram, there will be no mammogram.

    And we do have "researchers" like Simon Wessely to thank for propagating these attitudes.

    Frankly, your own attitude about "using treatments that are not science based" is just as bad, if not worse. Seeking treatment based upon theories that contradict what one group says does not put the patient or that other treating doctor to blame when the GP decides to be a douchebag and ignore major likelihood of deadly disease. It also reeks of an attempt to blackmail the patient into stopping a treatment the GP disagrees with, since any symptoms will be blamed on that unapproved treatment until the patient complies.
    Wildcat likes this.
  20. adreno

    adreno 3% neanderthal

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    Hip

    While I agree that interest (internal validation) is important, so is external validation. To have external validation, the field must be seen as interesting and important from the viewpoint of society. It isn't. Also, the field have unfortunately been linked with so much bad press and pseudoscience, that I believe most researchers dread to go near it, even if they do secretly find it fascinating. Who wants to risk their careers, when so many other fields of research will be so much more rewarded. It takes a very special and dedicated kind of person.

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