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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Email from Dr Mikovits

Discussion in 'General ME/CFS News' started by Quilp, Feb 2, 2010.

  1. Kati

    Kati Patient in training

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    Mark, all PWC will need to get together on a class action. Indeed it's been criminal and people can not erase what's been done for 2+ decades. But there is the hope that all of us can get better, soon.
     
  2. Rita

    Rita Senior Member

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    I think the mail from Judy will be the best to start each day reading it and I think my immune system will be able to kill a few viruses with so encouraging news. This will be a long mantra ...
     
  3. sproggle

    sproggle Jan

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    :victory: She's fantastic!!! :victory:

    Thank you Mark so much for sharing this :D
     
  4. Sunday

    Sunday Senior Member

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    Thanks for this.
     
  5. Countrygirl

    Countrygirl Senior Member

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    Thank you so much Mark for posting this. It has really cheered me.
     
  6. Daisymay

    Daisymay Senior Member

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    Mark thanks SO much for sharing JM's email and your email too, would it be OK to post both of these on UK lists to encourage people, what with all the Wessely paper and the Lynn Gilderdale case, the likes of JM's email are SO inspiring and so encouraging, so full of compassion .

    As Nancy Klimas and others have said, now is the most hopeful time we've all had for years, for ever really, so please Mark, keep your pecker up, I really don't think it will be long before the paradigm shift and Wessely and co are exposed for what they really are and hopefully along the road there iwill be treatments to help us all, but as you say just being validated will be amazing.

    So hold in there, and thanks so much for sharing these emails.

    Luv,

    Daisymay
     
  7. Countrygirl

    Countrygirl Senior Member

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    Dr Judy's message is really inspiring and it is wonderful to know we have such a champion. I did notice, however, that she side-stepped the question concerning the results of the 500 people from London who were tested. If I have to wait any longer on the edge of my seat for that information, I shall fall off. Has anyone heard anything?????Why hasn't she said? Are they waiting to retest perhaps? I'd have thought not because she is quoted as saying that the same results were holding up'. Is she waiting to include the test results in a publication.......Anyone know anything??
     
  8. willow

    willow Senior Member

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    Mark, thank you so much for posting both of these.

    Your email is very moving, I'm not surprised JM cried.

    Hang tough Mark, we're with you, and all hoping that something very special is just around the corner.

    Even if you don't feel it right now... or didn't when you emailed Judy, to me you sounds thoughtful, strong and proactive. The world needs more of that :)

    Take Good Care

    Willow
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Countrygirl, standard protocol is that if there is a study that is submitted for publication or will likely be, they don't tell the public or in a public setting what their results are.

    Scientists don not consider such statements credible until is in a peer-reviewed publication. So maybe this is going to publication?

    Tina
     
  10. Countrygirl

    Countrygirl Senior Member

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    Hi Tina,

    Yes, that is what I am hoping. I will try to cling to the edge of my seat for a little longer.
     
  11. Nina

    Nina Senior Member

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    Hi countrygirl,

    I have always wondered about this quote. Just think about it: The WPI tests 101 of their own patients and 500 from London?? Even if these would include the healthy samples it is a very high number.

    Of course I would hope, too, that it is true and they are only waiting for confirmation/publication.
     
  12. Adam

    Adam *****

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    Yeah hang tough.:worried: Think... even if some of us are not XMRV + then there will be a pardigm shift. And end? to Pschosomatic nonsense - non-treatment of sick people.:victory: An emphasis on biomedical research into stuff like Lymes and thyroid problems or whatever other viruses or bacteria that make people ill. Don't despair whatever may be. Like you - just to have my illness validated as real has for so long been my only goal. Now, better health is a real possibility.

    I know I am better person than the one who came down with a virus October 1996.

    Judy is our heroine. In the words of Bob Dylan...

    ...I'd go crawling down the avenue
    no there's nothing that I wouldn't do
    to make you feel my love...
     
  13. V99

    V99 *****

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    I fear that those not diagnosed with XMRV (If it is responsible) will still be facing the same old problems. Therefore we should stick together, and continue to be vocal about research and treatments.
     
  14. Don't forget, WPI is working with Dr Jonathan Kerr who I have no doubt will be attempting to reproduce this research here in the UK. (He is a believer, by the way.)
    I suspect that is what is meant by the 500 samples.

    BUT these are just rumours reported in the press... if I've learned anything from working in the media in the last 10 years, it's that you should scarcely believe ANYTHING you read in the papers and/or see on TV until you can prove it yourself from personal experience OR talking to somebody directly who is an expert in the field.

    Rachel xx
     
  15. alice1

    alice1 Senior Member

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    Thankyou for posting your e-mail Mark.
    Words of encouragement and kindness are what we need right now.
     
  16. sproggle

    sproggle Jan

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    Yes we need to stick together!!

    I fear the same, we must all stick together as the psychiartrists will not give up they will still put their psychosomatic label on anyone who hasn't got a proven known medical condition and therefore can't defend themselves well against this nonsense.

    Unfortunately even if XMRV is proven to be causal and the majority of ME/CFS sufferers have it, there is still bound to be some sufferers who test negative. There will of cousre be an underlying (but not yet known) cause and we must stand by them as their fight will be nowhere near over. :rolleyes:

    At least we could say though "look you dimwits you were wrong about the 1000's of XAND sufferers, are you really so arrogant to think there is no chance whatsoever that you are wrong about this patient group?" Unfortunately I think they are! :Retro mad:

    Jan xx
     
  17. kurt

    kurt Senior Member

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    Although the hope is high here, I think the issue of political validation for ME in the UK should be separated from the XMRV hypothesis.

    Biologically speaking, this illness has been validated again and again. The political problems of ME/CFS in the medical system are not due to lack of biological validation that this is an organic illness, they have some other motives, and those motives must be directly addressed.

    Nobody that I know of lives in a country where the medical system and average doctors embrace ME/CFS. We ALL have this political problem and most of us have to pay out of pocket for treatments.

    Also, WPI has yet to cure anyone of ME/CFS. I just do not want to see people here playing into the hands of the psychologizers by placing all bets on XMRV. We need hopes in more than just XMRV, because if XMRV is eventually proven to NOT be causal, such as being only a passenger virus or not even present, we still need to have hope for the future. There are so many new directions now for ME/CFS, something will work out for us even if XMRV is partly or even totally wrong. My point is just that nobody knows how this will play out yet. A scientific consensus has to be reached before any politicians will pay much attention, and we are not even close to that point yet.

    In the mean time, I think we need to keep telling our stories, let our voices be heard for our own sakes. That will probably do more to help people accept ME/CFS than promoting any single study, no matter how promising it looks.
     
  18. Good point Kurt; we shouldn't get ourselves too worked up about this. We have a hard road ahead.
    I do disagree with some of what you're saying though.

    There has never been a scientific discovery about ME that warranted front page news before. At least, not in the UK.

    I think the problem is that while there are studies that prove that it's an organic illness, they are all stuff that happens around the edges (low cytokines, low NK cells, leaky gut) and not the total proof of the mechanism of the illness. Are low NK cells the cause or the effect, for example? Until that's sorted it will be hard to get traction.

    I think the lack of a mechanism has created a vacuum for the psychologizers to fill. It's not like we started off with solid science (we had a slim handful of papers in the 80s) and the insurance industry came in and deliberately corrupted the science; the psychologizers just saw their opportunity to corner the market on an illness that would guarantee them funding for years to come, and the insurance industry seized on that.

    If we look at history, suddenly everything changed for sufferers of MS and AIDS when the actual mechanism was found. They still didn't have a cure straight away. But the psychologizers vanished gradually one by one.

    But then, I am a noob at this and I know some of you guys have been on this (very slowly moving) treadmill for decades so I may have got it all wrong. I guess it would be prudent to be cautious still and try to refrain from saying that ME is caused by a retrovirus until the validations start to come in.

    Rachel xx
     
  19. anne

    anne Guest

    Freep, that's all very well said and I think you are absolutely right.
     
  20. Gerwyn

    Gerwyn Guest

    I dont agree that the disease has been repeatedly validated, hypothesis are myriad but disparate, and none of the studies has carried enough weight to convince independent scientists .Statistics are sketchy or non existent correlations when quoted are weak.In my view we need a unified hypothesis to explain the constellation of symptoms reported which can then be formally tested using multicentre studies which are actually meauring something which exists independently of a diagnostic labe-l such as a symptom profile.Mitochondrial dysfunction would seem an obvious candidate but i,m sure there are others.Without unequivical sciencetific evidence the political interests will win.Individual "case studies" carry no weight with policymakers .at the moment none of the published studies can differentiate between cause and effect or provide anything like a full explanatory model.I,m sure that all the" bits" are out there but at the moment our theoretical models appear incommensurate with one another certainly to third parties.I agree with Rachel without the explanatory mechanism we will always struggle as did MS parkinsonsons eplilepsy etc
     

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