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Horrifying article in Sunday Times

Discussion in 'General ME/CFS News' started by MeSci, May 5, 2013.

  1. alex3619

    alex3619 Senior Member

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    Its not just about low funding itself. In an environment of poor funding our researchers design smaller studies so they cost less. This means the scope and reliability of those studies, and eventual replicability, is lower than it should be. We need studies that are larger in general, but also because the heterogeneity of the patient mix, even under ME diagnoses, is probably high.
    Allyson, taniaaust1 and Valentijn like this.
  2. David Egan

    David Egan Hermes33

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    Yes Alex I agree. Large studies require more money. And more money requires credibility among those who give out money.
    Heterogeneity can be minimised by use of strict diagnostic and trial entry criteria (Canadian Consensus Criteria) and by use of well known biomarkers and use of subgroups. It involves a new strategic mindset. I've tried to raise awareness about this at www.cfs-ireland.com

    I am very impressed with the contributors and quality of contributions on Phoenix Rising. I may not agree with some comments but I respect the quality of comments and contributors on this site.
  3. Allyson

    Allyson Senior Member

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    yes i hope it is a tabloid too - still - so damaging this kind of thing.

    Ally
  4. Allyson

    Allyson Senior Member

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    Yes i agree David - and i thik it has a vvery good reputationn due to that ; i wil check out your Irish site.
    the "Viking" link for ME/cfs?

    cheers

    I am an Egan too! lol
    \
    Ally
  5. Allyson

    Allyson Senior Member

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    yes i di not think Murdoch papers retained much credibility, alas.

    A
  6. Allyson

    Allyson Senior Member

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  7. alex3619

    alex3619 Senior Member

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    Unless something very specific is being investigated I don't think studies should subgroup too much in the patient recruitment. I think they should subgroup for analysis, using every subgroup available. This of course means that for statistical reasons you need an even bigger patient cohort, which brings us back to money. It also means that the study has to pay for all those tests ... even more money.

    Where recruitment subgroups are good is if we can identify treatment biomarkers - markers that enable us to identify those who will respond to treatment are a great idea if you are trying to establish how effective a treatment is. We all know how most treatments only work for some and how we currently have to try them to see if they work (Rule 22: The Lemon Rule). However if we had reliable treatment biomarkers then the guesswork would to a large extent be taken out of this.

    Even the CCC or ICC is not guaranteed to get a good cohort, just a better cohort. I am in complete agreement that to really advance research we need good biomarkers, and that existing biomarkers should be used where ever feasible.
  8. Bob

    Bob

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    Esther12 has flagged up a publication by the SMC, which seems to date back to Feb 2013, but I haven't seen it before:

    http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

    It's a self-congratulatory publication, in which, they celebrate their role in various ME-related media issues, including the Sunday Times article...

    Esther describes it well...

    'maxwhd' on Twitter has highlighted some relevant text, which I've quoted below:

    http://www.twitlonger.com/show/n_1rkle9f

    Esther12, Dolphin and Roy S like this.
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    By golly, this sure sounds like the language of propaganda --
     
    "the SMC has also helped to set the agenda and frame the narrative of reporting "
     
    "The SMC engineered the coverage"
     
    Sean, alex3619, ukxmrv and 3 others like this.
  10. Shell

    Shell Senior Member

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    My thoughts exactly.
  11. David Egan

    David Egan Hermes33

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    Hi Ally so you are an Egan too. Thats rare and not many emigrated to Australia. You must have Irish roots then.
    As regards the viking link, Dr. De Meirleir believes that a viking or Scandinavian gene is implicated in ME, and that northern and western european peoples are affected by this. The human genome is vast and largely not deciphered for relevance to illnesses, so its impossible to validate it.
    Allyson likes this.
  12. David Egan

    David Egan Hermes33

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    I agree. Though I would add that the new and emerging use of (ME) Bio-Banks storing various types of samples from genuine ME patients (using CCC 2003 and ICC 2011) are the way forward for ME research globally. A team of researchers could take samples from 200-300 ME patients from a Biobank, including those who are severely ill (bed ridden). And collaborate with other research teams on samples of the 300 patients, with various teams focussing on specific aspects such as immune system, infection, mitochondria, neurological and brain, endocrine, intestinal, vascular, etc. The biomarkers listed here could serve as targets - www.cfs-ireland.com/structure.htm#8 . These research teams could then join their results together to build an indepth profile of all biological abnormalities, dysfunctions and infections present. Then subgroup the patients. New biomarkers could be added and old ones further validated, amended or deleted.

    Having such subgroups would enable the development and deployment of medical drugs. Medical drug and herbal interventions could be devised by Biovista ( http://biovista.com ) in the USA which is engaged in research and data mining of thousands of medical drugs (including some which are currently out of use) to find matches between them and the symptoms, abnormalities and dysfunctions found in ME. They are compiling a list of these medical drugs. The FDA and pharmaceutical companies could also be drawn in to devise new drugs. The diagnostic criteria and biomarkers mentioned above could serve as a guide for assessing the effectiveness or ineffectiveness of a potential medical drug.

    All applications for research project funding (globally) should be carefully drawn up by an international team of experts in the field of ME and submitted every year to governments and government agencies in the EU, North America, Japan, China and Australasia. This would ensure pro-active measures to stimulate funding for research and international coordiantion of ME research towards defined research goals and objectives.
  13. biophile

    biophile Places I'd rather be.

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    Thanks to Esther12 and Bob for bringing this to our attention.

    http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

    I thank the SMC for clearing up any doubts as to whether the onslaught of accusations about harassment, and the conflation of PACE Trial criticism with ideological extremism, was all part of an orchestrated campaign.

    A reduction in any harassment would be good. I wonder if this is mentioned in any of the recent coverage, or were the SMC happy to perpetuate an exaggerated public view of how much harassment is still going on. Has there been even a single conviction yet, or are death threats legal in the UK?

    Oh no, they are giving what the extremists wanted all along!

    Gee, I wonder why?
    Dolphin, Svenja, Bob and 2 others like this.
  14. Allyson

    Allyson Senior Member

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    Hi thanks David -

    I thought the Human Genome project would get there eventually -- is that not likely i your opinion?
    For example a Melbourne University geneticist told me recently they would have full genetic testing soon - withintn 2-3 years - for a related condition that is also stongly prevalent in the Irish and related Caucasian races ( see my signature below for a link). He said things are movign very quickly nos but he was not talkinng about HGP specifically.

    THere are quite a few Egans here in Australia however - it is by no means an uncommon name.
    THere are also some McEgans here and i think Keegan may be an adaptation thought i am just guessing on that last one.
    Not sure where our Egans came from - i think from West coast Galway where our Brennas came from...(surely one of the coldest place on earth BTW .. !) SO glad I am now here in warmer climes - even if it was a tragic past that caused that move.

    cheers

    Ally

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