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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.
     
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  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 *****

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

    Ally
     
  4. Allyson

    Allyson *****

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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 *****

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

    A
     
  6. Allyson

    Allyson *****

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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

     
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  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"
     
     
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  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.
     
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  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?
     
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  14. Allyson

    Allyson *****

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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
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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

    With reference to the SMC report above, for which extracts have been posted in this thread (on Page 10), here is the link for a report recently published by Jane Colby of TYMES Trust around the setting up of the UK CFS/ME Research Collaborative:


    http://bit.ly/1vSRhOI


    MAY BE REPOSTED

    A new report from Tymes Trust:

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)

    Today Tymes Trust publishes the inside story on the Collaborative. Here is the introduction.

    -----

    Introduction

    When the UK CFS/ME Research Collaborative (UK CMRC) was set up in 2013, the Young ME Sufferers Trust declined to attend the launch, due to concerns we expressed in a Statement, the text of which is here:

    http://www.tymestrust.org/txt/alert201305meawarenessday.txt

    Our concerns continue. The following information is from 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC).

    We note:

    In the run-up to the full formation and launch of the Collaborative, a meeting was recorded by the Science Media Centre (SMC)'s outgoing head of Mental Health (details below). In attendance were key persons now involved with the Collaborative. Under their heading 'Harassment' (of researchers) they list:

    * Freedom of Information Requests

    * Complaints to the GMC and various institutions

    * Parliamentary Questions


    A series of Action Points include:

    * 'Support4rs - Work with Peter White and Simon Wessely to develop resources for dealing with harassment'

    * 'SMC – Run a press briefing on biosocial illness to improve public understanding.'

    NB Two sets of written records are kept of Collaborative meetings; one for the Board, another for the public. This should be borne in mind when reading records that are placed online.

    -----

    Our report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community.

    You can find our report here:

    http://bit.ly/1vSRhOI

    Jane Colby, Executive Director

    Lesley Scott, Scotland Representative

    The Young ME Sufferers Trust

    -----------------------------------------------------------------------

    I wasn't familiar with "Support4rs" mentioned in this extract. In fact, initially, I read it as "Supporters" and assumed it contained a typo, since "4" sits above "e" on a qwerty keyboard.

    This is the website for support4rs:

    http://www.support4rs.com/

    "support4rs - The Government's Preferred Supplier...


    ... contracted to provide protective services with regard to Animal Rights Extremism to research councils, public research institutions and medical research charities. Consequently we work collaboratively with the leading research locations throughout the UK drawing upon the experience of each for the benefit of all."

    "We assess the current intention and capability of Animal Rights Extremist groups and what risk they present to members of the biomedical research sector.


    "We assist with the compilation and maintenance of management plans and procedures needed when responding to any animal rights related incidents or threats.

    "We advise stakeholders in respect of proportionate responses to incidents and the balance between lawful protest and unlawful activity."



    There is a new thread, here:

    http://forums.phoenixrising.me/inde...arch-collaborative-uk-cmrc-tymes-trust.32302/
     
    Last edited: Sep 1, 2014
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  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Death threats are definitely illegal! I understand that there have been no convictions, or prosecutions, or even arrests. There was one case of alleged assault reported by another member where head of the ME Association Charles Shepherd allegedly punched someone! There was a link posted to the incident on PR but I fully accept Dr Shepherd's response that it wasn't true (like most or all of the other allegations against the 'ME lobby'). It's still online though - here.

    To be fair, SMC do say in their document that those doing the harassment are
    and that
    But maybe those quotes get lost amid the general emphasis and exaggeration.

    There was a thread recently where a journalist was complaining about being 'attacked' on Twitter by ME/CFS patients following his own article. A brief look at the Twitter pages revealed a number of tweets which politely disagreed with him! I could see nothing that could be described as an attack.
     
    Last edited: Jan 17, 2015
  17. biophile

    biophile Places I'd rather be.

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    Death threats are indeed illegal and other harassment can be also prosecutable. But it may be difficult to prove and there may be some threshold to meet before it explicitly becomes credible or prosecutable enough for the law to take effect. e.g. perhaps "I'll coming to kill you" would be treated differently than "you will all pay"* or "I hope you suffer".

    Every year in the UK there are thousands of reported cases of harassment (mostly domestic) and thousands of attempted prosecutions. Nurses also cop a range of abuse and harassment regularly from all types of patients.

    Trolling and online abuse has become common on today's social media on almost any issue (if you gathered 17 million people at random from the world, surely a fraction of them would be trolls, and if you gave them ME/CFS and treated them poorly, surely their trolling would become directed towards ME/CFS related issues).

    There are laws in place helping to prevent researchers from being subjected to repeated abuse and harassment. So it seems odd that a notoriously "dangerous" and abusive patient community aren't being prosecuted regularly or at all in relation to research. That doesn't mean there have not been an occasional case between individuals over the last three decades.

    I read a report mentioned on another thread which made me conclude that in general ME "militancy" or "extremism" just isn't bad enough for clear cut prosecutions and is more difficult to control because it has to be balanced with laws on freedom of expression. I imagine it would be unpleasant and unsettling being at the receiving end of the worst examples, but the vast bulk of it has not been death threats, but protests, objections, and criticisms, possibly some of which got heated or uncouth. One of the news articles (the one on this thread perhaps?) implies that the 50-80 figure isn't the number of people engaging in death threats but the number of alleged extremists, of which only a small fraction have allegedly resorted to death threats.

    http://forums.phoenixrising.me/inde...pace-trial-protocol.3928/page-123#post-504816

    Indisputable harassment of researchers is unacceptable, it's just that all the hyped news coverage and absurd comparisons to killers and warzones degrades the credibility of those making the claims. It is also rather revealing that some of the figureheads complaining the most in the press about harassment have behind closed doors seemingly endorsed a statement that freedom of information requests are the most "damaging" form of harassment.
     
    Last edited: Jan 17, 2015
  18. charles shepherd

    charles shepherd Senior Member

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  19. charles shepherd

    charles shepherd Senior Member

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    Please could you withdraw this allegation

    It is untrue and libellous

    I don't believe that violence, aggression or abuse solves anything and I have certainly never 'punched anyone'

    Here in the UK, if such an incident had taken place, it would be regarded as professional misconduct by the GMC

    Do you ever wonder why so few of my medical colleagues (apart from psychiatrists) want to get involved with treating or researching this dreadful illness

    I really do despair at times….
     
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  20. akrasia

    akrasia Senior Member

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    Charles Shepherd wrote in a response to a rumor:

    Speaking of calumnies and this from the head of the ME Association. No wonder people in the UK are despairing.
     
    Last edited: Jan 17, 2015
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