International ME/CFS and FM Awareness Day Is On May 12, 2018
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UK Research Collaborative Conference in Newcastle: 13th - 14th October

Discussion in 'Upcoming ME/CFS Events' started by charles shepherd, Mar 26, 2015.

  1. Wildcat

    Wildcat

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    @worldbackwards ... I don't get Essentials magazine. A letter from whom? From Colin Barton or someone else?
     
  2. worldbackwards

    worldbackwards A unique snowflake

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    A theory:
    Deep in the bowels of the Sussex and Kent ME/CFS Society, there is a small locked room. Cobwebs have formed on the rusted door handle, but put your ear close the the keyhole and you can just make out the sound of a man repeating the words:
    over and over again, occasionally pausing to laugh maniacally before he starts again.

    That man is Colin Barton. He is feared, but he should be pitied.
     
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  3. worldbackwards

    worldbackwards A unique snowflake

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    From Barton himself.
     
  4. Wildcat

    Wildcat

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    @charles shepherd. Has such a letter from Colin Barton been just published in Essentials? Why?

    And what are the "various approaches" Barton is referring to? The Sussex backs NICE and BACME.

    Why give Mr Barton a platform at this point in time? Colin Barton does not speak for Sussex ME patients, he speaks for himself and his own 'CFS' Society, which has long term links with Barts and Peter White.


    Mr Barton has still not answered the question asking him to explain exactly why and how the NICE and BACME-supporting Sussex CFS Society is assisting with Dr Mark Edwards MRC funded research?

    ‘This project that is being funded by the Medical Research Council will involve three scientists - Dr Mark Edwards, a neurologist at the Motor Neurosciences Unit, UCL Institute of Neurology, Prof Neil Harrison from the University of Sussex and Dr James Kilner at University College London.’

    The Sussex CFS Society Charman, Colin Barton writes on the Sussex Society site: , “We are delighted to be able to assist with this most important study.”


    @charles shepherd , as a CMRC Member, could you please ask Colin Barton the question again.

    ~~~~~~~~~~

    Involvement of the Sussex CFS Society in MRC funded CMRC research does nothing to improve ME patients' confidence in the CMRC.

    See my posts #580 and #662 on this thread.
    .


    .
     
    Last edited: Nov 16, 2015
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  5. worldbackwards

    worldbackwards A unique snowflake

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    This is the AfME statement:
    This is the letter. Changes from the old statement highlighted:
    Don't say I never do anything for you @Wildcat! :)
     
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  6. charles shepherd

    charles shepherd Senior Member

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    The MEA publishes several pages of letters in ME Essential magazine

    They cover a wide variety of topics and opinions

    In the current issue they cover dental amalgam filling removal; distinguishing between ME/CFS and MS; nomenclature/SEID - from Shirley Conran; NHS prescription charge exemption and ME/CFS; sore throat treatments; GET and severe ME/CFS - to name but a few

    On a personal basis, I agree with some of the points and opinions that are being raised. I disagree with others and sometimes ad a comment to the letter.

    This is what is known as having a free press!

    The letter from Colin Barton expresses his view that early diagnosis and good management means that there are more people in the mild to moderate category than having severe andy chronic ME/CFS

    I suspect that this is a personal opinion which is not based on any robust epidemiological evidence on outcome

    It is not a statement that I would agree with
     
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  7. Wildcat

    Wildcat

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    Thanks @worldbackwards :)

    Link to Barton's (and others) statements on AFME site 2010
    http://www.actionforme.org.uk/get-i...-recovery/can-and-do-people-recover-part-two/

    Sussex Society site
    http://www.measussex.org.uk/Latest-News-About-ME-and-CFS-|-M.E-C.F.S-News/Page-17.html

    Encouraging impressions – August 08 [​IMG] [​IMG] [​IMG]
    Wednesday, 06 August 2008 09:32

    'One interesting development that we have noticed in our area is that many more people with ME/CFS these days are falling into the mild to moderate category and improving with the help of various approaches more quickly than previously.

    As more professionals are recognizing the illness sooner and administering symptom control along with giving sensible management advice people seem less likely to slip into the chronic more severe illness. In areas such as ours where there are specialist NHS services people are being diagnosed sooner and GPs giving good early advice more often. However the domiciliary services are also seeing a number of the severe patients for whom things will probably take longer.

    We are starting to see with ME/CFS as with most conditions that it makes sense to intervene earlier rather than later to prevent chronicity and severity of illness. Although the situation is far from perfect things are improving and It’s great to see more of our members moving on and being able to take up active lives again.'
     
    Last edited: Nov 16, 2015
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  8. Wildcat

    Wildcat

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    @charles shepherd. I would rather that the MEA had asked Mr Barton my question, and followed up until he responded.

    Its a CMRC matter, a matter of accountability, and we deserve a response. So far the question has been sidestepped.

    Instead Mr Barton gets to air his unsubstantiated personal opinions in Essentials magazine.
    .
     
    Last edited: Nov 16, 2015
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  9. Countrygirl

    Countrygirl Senior Member

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    I am puzzled about the nature of Colin's involvement with the Collaborative. A doctor-friend of mine has just told me that Colin has written to her to ask her to send him a review of the last meeting which she attended. I am puzzled as to why it is his place to do that and is he contacting the other attendees?

    Her response was negative and I think he was attempting to illicit a positive review. He was obviously disappointed as he didn't reply.
     
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  10. Wildcat

    Wildcat

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    Further to my post (#580) 'HOW exactly is the Sussex CFS Society "assisting" with the Edwards et al MRC funded research?'

    Previous exploits of the Sussex CFS Society and its Chairman Colin Barton do not inspire confidence in their involvement with any further ME research.


    2009: Sussex CFS Clinic Clinical Lead Dr Mike Broughton and Phil Parker, and the Sussex CFS Society Chairman Colin Barton, discuss Lighting Process and Lightning Research at the Swallows Retreat Lightning Process Centre in Sussex in March 2009.

    https://web.archive.org/web/20090715072135/http://www.swallowsretreatanswersme.co.uk/home/2009/3/1/phil-parker-at-swallows.html

    Phil Parker at Swallows
    Sunday, March 1, 2009 at 8:26PM

    ‘Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.


    They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty guests and users of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

    Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

    Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda's Lightning Process participants at Swallows’


    ~~~~~~~~~~~~~~~~~~~~~~~~~~
    .

    No such Lightning Trial was ever published. But Dr Broughton did recommend Lightning Process to Sussex CFS Clinic patients during his time as Clinical Lead of Sussex.
    .
     
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  11. Woolie

    Woolie Senior Member

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    Don't know if people have commented on this presentation from the Programme. Thought I'd add, because I have some background in the area.

    Neural correlates of fatigue: a voxel-based morphometric MRI study of CFS/ME, Whitney General, Bristol University.

    These grey matter density results are likely to be artefactual, because sample size to low, and chances of false positives are high. This is a common problem in this kind of research.

    But what I's most like to point out is the interpretation. Notice how the interpretation goes back to a psychogenic model of MECFS. Notice that General suggests our frontal and occipital ("sensory") lobes are hyperactive. I think its important to understand what's being implied here. Not that we are smart and think a lot, but that we are fretting over our symptoms.

    Its unfortunate for the author that the hyperactivity is in the occipital lobes, and area almost entirely dedicated to visual processing (why would we be more active here, I wonder?) - but the author nearly managed to lose this fact by referring to these areas as "sensory" areas. Kind of makes it sound like it might be about bodily sensations, or something?

    Edit: actually, reading the abstract again, the occipital lobes might not have been involved (just a reference to another study). "Sensory areas" is not clarified. even though the various different ones are spread very widely across the brain.

    Note the Chalder fatigue scale results (self-reported fatigue) weren't mentioned. I'm figuring that because they didn't correlate with anything.

    My thoughts?
    * These grey matter studies require huge samples, and very careful matching of comparison groups.
    * I don't think they can be used effectively in an exploratory way - you need a hypothesis as to which areas you think will be extra dense/sparse. Then test that. Not just fish away in the data till you find some difference.
    * The results could be totally spurious. Or they could be real and related to some incidental difference between groups. Maybe the CFS/ME patients were more educated, for example?
    * You cannot really infer from these results that any group is thinking more/less in a certain way. We simply dom't know enough about what these areas do to make this kind of "reverse" inference.
    * Look how the results can be used to confirm a psychogenic view of the illness.
     
    Last edited: Nov 17, 2015
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  12. worldbackwards

    worldbackwards A unique snowflake

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    Good God.
     
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