1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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Another good article by Sonia Poulton (daily) mailonline

Discussion in 'General ME/CFS News' started by maryb, Sep 20, 2012.

  1. maryb

    maryb iherb code TAK122

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    This is from 19th September but is still taking comments.Be good to add as many as we can.
    I have taken the text of the article out so that the blog gets as many hits as possible.

    http://poultonblog.dailymail.co.uk/2012/09/me-no-more-in-the-mind-than-multiple-sclerosis.html?forumid=331851

    ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?
    Ever since I first wrote on the subject of Myalgic Encephalomyelitis - or to afford it a more user-friendly title, ME - earlier this year for MailOnline, http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html I have been overwhelmed by the response from patients and their loved ones.....................
    Enid, Merry, Bob and 3 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Thanks - I posted an appreciative comment yesterday. Let's give her lots of hits on her blog to show her editor.

    There's also a good piece by Amy Dockser Marcus in the Wall Street Journal - despite it being good, the comments are quite disappointing, I think. I'm not up to registering today but if anyone wants to leave an appreciative comment that would be great:

    http://online.wsj.com/article/SB100...YWORDS=AMY DOCKSER MARCUS#articleTabs=article

    We want to make sure that when the next Lipkin study with its broader remit brings its results out, these journalists who are well-informed know it's worth writing a piece and we can help by visiting their blogs and leaving positive comments.
    Nielk likes this.
  3. urbantravels

    urbantravels disjecta membra

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    From personal knowledge, there are more (good) journalists willing to write more pieces than there are editors who are willing to run them. That's where lots of click-throughs and intelligent comments may help, not just to show appreciation for the writer, but to let the editors know that this is a hot topic that attracts eyeballs.
    Little Bluestem and L'engle like this.
  4. SOC

    SOC Moderator and Senior Member

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    Even though you can read the entire paper on this thread please click on the link to the article so that the author, her editors, and anyone else looking at hit statistics knows this is an important topic worth pursuing. Tell your friends and family about it, too.
    ggingues, L'engle and Nielk like this.
  5. maryb

    maryb iherb code TAK122

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    I agree SOC I have amended my post. If anyone can't get the link please PM me and I will let you have a copy of the article.
    SOC likes this.
  6. Sasha

    Sasha Fine, thank you

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    Thanks, Mary. I hope she's getting lots of hits!
  7. urbantravels

    urbantravels disjecta membra

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    Oh lord, I just posted the world's most long-winded comment on the blog (awaiting moderation). I need to be controlled somehow.
    beaverfury and Valentijn like this.
  8. SOC

    SOC Moderator and Senior Member

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    LOL! Did you gush, too?
  9. urbantravels

    urbantravels disjecta membra

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    No, there was another poster who made the usual kind of ignorant statement (a minority among the many posts of thanks) and I decided to take her to task at great length about whether ME/CFS is a "real disease." Dunno if it passed moderation. Of course that other poster will probably never return to read it, so basically I'm just venting.
  10. Purple

    Purple Bundle of purpliness

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    Haven't seen your comment - but answering ignorant comments with how it really is not venting (to me anyway :)) - and even though the original poster may not return, other readers will see your response so it's a chance to educate! Besides, it isn't easy to make a short summary of the situation surrounding ME - there is so much to it.
    Little Bluestem and SOC like this.
  11. alex3619

    alex3619 Senior Member

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    There is a comment on there by a Sasha.

    "Thank you for this well-informed and thoughtful article. There's a real gap in the market for an investigative piece on the role of the psychiatric lobby in this non-psychiatric disease.
    The context of the Lipkin team's finding that the retrovirus XMRV is not linked to ME is that Dr Ian Lipkin, often described as the world's leading virus hunter, is running another study looking at a much wider range of viruses and pathogens in ME as well as immune host response markers. During the XMRV press conference, he made it clear that ME is not a psychiatric condition.
    Despite this, some of the press coverage ran headlines stating "No viruses cause ME" or even "ME is probably a mental illness". The logic was, "it's not this virus so it's not a virus so it's a mental illness." Unbelievable.
    It would be fascinating for non-journalists to know how this spin - or rather, 180 degree flip - emerges."
  12. alex3619

    alex3619 Senior Member

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    "MS is often misdiagnosed as ME, and vice versa. Both disorders have characteristic lesions in the the brain and spine but the lesion pattern is often different (though there is overlap). ME patients have been found on autopsy with lesions of the dorsal root ganglia that do not show up on normal testing.
    ME and MS also share many biomarkers. There is one that tends to be different between the two disorders though, which is elastase. Its high in ME, and not elevated in MS.
    The claim that ME is psychosomatic is due to the psychogenic fallacy - there are two papers on this by Sykes.
    Most of those with ME do NOT care about the label, we care about the consequences of the label - psychogenic labels lead to no testing, no research, no treatment that works. Diagnostic confusion leads to badly flawed research - especially in the UK which uses the Oxford definition of CFS which has been shown to create very different patient cohorts from the CCC definition for example. So the label is stuffing up the science"

    Just posted this to counter the post that said MS and ME have nothing in common.
    SOC likes this.
  13. urbantravels

    urbantravels disjecta membra

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    Mine doesn't seem to have passed moderation. Either because it was too long or because it had a URL in it (a link to the ICC) or because I made a snarkish comment about the British press :eek: Wish I would have gotten a notice of some kind to let me know why. Maybe they just don't allow Yanks to post.
  14. alex3619

    alex3619 Senior Member

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    There could be a big delay in moderation too. If mine gets posted and urban travel's comment doesn't we will know it was passed over.
  15. urbantravels

    urbantravels disjecta membra

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    No new comments at all have appeared since 3 pm today - er, that would be yesterday in GMT - it's still the 20th here - just barely.
  16. currer

    currer Senior Member

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    I was thinking yesterday and I came to the conclusion that the psychiatric lobby are now (post Lipkin) in a different LEGAL situation with regard to their preferred model for treating ME. Their excuse, when a patient was harmed by their beliefs ( as has happened when patients have been forcibly hospitalised in psychatric wards) has been that there is no other evidence that ME is a physical disorder.

    The huge publicity around Lipkin and the future research, not to mention the Norwegian rituximab studies, means that psychiatrists can no longer be protected by the lack of an alternative model for this illness should they harm a patient by forcibly imposed psychiatric treatment.

    I think this is a very important change and one we ought to do our best to publicise.

    I wonder whether this is why they have been so quiet post - Lipkin?
  17. alex3619

    alex3619 Senior Member

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    Hi currer, the evidence has been there for a long time and its been ignored. What Lipkin, and those working with him, have done is to raise public awareness. Psychiatric diagnosis is hypothetical. Its not supported by the bulk of scientists. The hard evidence is against them. I wonder what legal issues would indeed arise, especially since in the UK the NICE guidelines would give them a lot of protection? Bye, Alex
    currer likes this.
  18. currer

    currer Senior Member

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    I suppose the NICE guidelines merely recommend GET and CBT.
    I was thinking of the cases where people have been harmed by hospitalisation.

    NICE does not say that people should be removed from their homes. What about the cases where children have been taken from their parents?
    NICE does not mention the advisability of doing this.

    Yes, I know there has always been evidence of the medical reality of ME, you are right that the essential point is the publicity. And the knowledge on the part of the psychiatrists that real research witll continue.. They cannot avoid the knowledge that it will no longer be safe to promote the psychiatric model of ME.

    The falsity of their claims is bound to be made clear.
  19. alex3619

    alex3619 Senior Member

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    Forced sectioning and protection orders for children in the UK have their own laws. I simply do not know the legal standing, and for that we might need a UK advocate who has been researching this for a long time. Bye, Alex
  20. user9876

    user9876 Senior Member

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    I think there are legal questions for different people.

    1) Doctors treating people with ME who push their own GET programme. Although GET is recommened by NICE there is very little definition of what it is - outside of going to the trial protocols hence there will be many different varieties. I think in the PACE trial it was very gentle as they did not want to have to record adverse reactions. So what are the liabilities for a doctor pushing their own get programme say encouraging patients to increase exersice by 5 or 10 minuites a week. Or you mention children what about those paediatricians pushing children back to school as a graded attendance therapy.

    2) Those doing and publishing research - this is more interesting. I think a good faith argument would be applied but if they were found to have covered up adverse reactions or changed results this could be taken seriously. I think White has been very careful to give himself room to argue that they just did the research.

    I wonder if the biggest legal risk is by those who publish text books. Especially those recommending things like graded attendance therapy for kids. I think one of the books aimed at helping doctors with their revalidation did this.
    currer likes this.

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