The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Radio interview with Martine MacCutcheon and Colin Barton 21st August 2017

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 25, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.bbc.co.uk/programmes/p05btwpy

    Starting at about 1.38.

    Interview with Martine MacCutcheon and Colin Barton of the Sussex ME Society, and supporter of Esther Crawley who is their medical advisor.

    This is a link to a transcript of the interview.

    http://www.meassociation.org.uk/201...-from-sussex-kent-m-e-society-25-august-2017/


    And the obligatory mention of the..........................

    Lightning Process…

    Danny: I am always wary about passing on tips and tricks, from others, but an emailer from Worthing, Denise, said earlier in her note that her daughter had M.E. from the time she was eleven, eventually had something called ‘The Lightning Process’.
     
  2. Countrygirl

    Countrygirl Senior Member

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    http://measussex.org.uk/

    Below is a 'flavour' of the Sussex ME Society.

    It presents a call for more Clinics, supports GET, and fails to warn of its dangers.

    They are clearly a prop of the BPS proponents and, of course, have EC as a medical advisor.




     
  3. trishrhymes

    trishrhymes Senior Member

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    I've read the transcript on the MEA website. Truly awful. Martine McCutcheon seems to think ME is the same as burnout, and Colin seems to think the NHS services are good and people generally get better.
    What a wasted opportunity.

    Aaaaargh.
     
  4. AndyPR

    AndyPR Senior Member

    Colin Barton went through a period of commenting on the MEA's Facebook post, trying to push the BPS agenda. I can't find the post to be able to quote exactly at the moment, one of his more memorable, to me, posts was a call for us to move on from the PACE trial and just accept it's published results....
     
  5. Countrygirl

    Countrygirl Senior Member

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    Now I wonder why the name Quisling springs to mind? :rolleyes:

    Yes, I know! How that dates me! :whistle:
     
  6. ladycatlover

    ladycatlover Senior Member

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    CB used to run an email List, I think mainly for "Group Leaders", when people disagreed with his stance he took umbrage and shut it down without notice. I have no respect for him.
     
  7. Countrygirl

    Countrygirl Senior Member

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    Yes, I was a member of that..........for a time :zippit:
     
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  8. neweimear

    neweimear Senior Member

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    Martine did us no favours. She is a lovely lady but she had bloody burnout!!! I live in Ireland and there is a house across from me that is used as a holiday home by people who live in the U.K. They know I am ill and pretty much housebound. They recently asked my mum how I was doing and the consensus was Martine McCutcheon had that, your daughter will be fine. We have been fundraising for OMF and my daughter went over to their house today looking for donations. These people are wealthy. They threw a few coins into our container!!! So insulting. Thankfully, all other neighbours have been generous. So frustrating when people dont get how debilitating this illness is. My point is Martine trivialised our illness and that has a knock on effect.
     
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    And she probably has no idea. Not that that makes any difference. For PwME in the UK especially (but not only) it just is salt in the wound.
     
    Last edited: Aug 25, 2017
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  10. NelliePledge

    NelliePledge plodder

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    Still pops up on MEA and of course AFME
     
  11. slysaint

    slysaint Senior Member

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    see also this thread
    http://forums.phoenixrising.me/inde...ine-mccutcheon-mentions-me.51927/#post-893194

    "Now fully back in work mode as she launches a new album Lost And Found, Martine is managing both ME and Lyme disease. “It’s easy when you’re on crazy schedules for things to flare up, but you just have to manage it the best you can. I do that with exercise, diet and pacing myself,” she adds."
    http://www.express.co.uk/life-style...-McCutcheon-illness-bankruptcy-Lost-And-Found

    "
    THE EastEnders and Loose Women star has been plagued by health problems over the years. She credits her new-found health with a daily dose of fresh air and exercise."
    "The popular Loose Women panellist has opened up in recent months about her long battles with depression, ME and Lyme disease."
    http://www.express.co.uk/life-style...ally-depression-EastEnders-Loose-Women-health
     
  12. Barry53

    Barry53 Senior Member

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    I guess that people, in the UK especially perhaps, genuinely get misled into thinking they have ME, when in fact they have simply run themselves into the ground. The CF versus CFS versus ME conflation confuses this further; and the people happy to perpetuate this confusion make it vastly worse. You then end up with reports of people with ME apparently responding favourably to treatment, and the patient genuinely (but misguidedly) saying how wonderful it all is. Not surprising that most normal mortals get taken in by it all.
     
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  13. slysaint

    slysaint Senior Member

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    Interesting post on prohealth forum from 2004
    Report on Kent (UK) M.E Medical Conference

    "In attendance were Chris Clarke - CEO of Action for ME (AfME), Professor
    Leslie Findley - Consultant Neurologist at Romford (Essex) ME/CFS Clinic,
    Mary Jane Willows - CEO of the Association of Young people with ME (AYME) &

    Dr Mario Verga - Psychologist who attended on behalf of the Kent & Medway
    PCT Steering Group for the new specialist NHS ME/CFS services. Although she
    wasn't introduced, I'm led to believe there was another member of the
    steering group present & have since been informed she wasn't a clinician.
    Colin Barton and Joe Marsh from the Sussex & Kent ME Society were also
    present."

    "
    Recalling a conversation with Professor Simon Wessely - which occurred
    during a medico-legal case they were sitting on - Professor Findley
    recollected how they were unable to reach an agreement. He stated how
    Wessely then verbally observed that the reason for their differences was
    because they were each seeing a different spectrum of patients
    - i.e Wessely
    's patients had different symptoms to those of Findleys. He (Findley)
    refused to elaborate on this point to the audience other than to say the
    common initiating factor in patients he saw was infection, insinuating that
    the patients Wessely saw didn't suffer this initial infection.

    "

    During the break I noticed that the Sussex/Kent Society had books from their
    library on display. These included titles from Michael Sharpe, Trudie
    Chalder
    & Frankie Campling."

    "
    What about the severely affected? Would there be domiciliary visits for
    those who were unable to leave their homes? Dr Vergara appeared to be
    totally unprepared for these questions, answering only with 'maybe',
    'possibly', 'hopefully', 'umm' and 'er'."

    "
    A member of the audience then stood up and asked if all the clinics were to
    be headed by psychologists. She was told to sit down by Colin Barton....
    ....
    Dr Vergara eventually stated that psychologists would
    head all the clinics."

    "

    Despite highlighting AfME's report on the severely affected he appeared to
    pay nothing more than lip service to this particular group. Clark later
    admitted they had nothing to offer these patients. It appears their plight
    is at the bottom of the agenda of both charities and the NHS alike."

    Writers observation:
    "
    I found Professor Findley's talk confusing. If he and Wessely are talking
    about two different disorders why do AfME continue to collaborate with
    Professor Wessely? Someone later remarked to me that they thought Professor
    Findley was two faced. I'd agree."
    "
    Barton and Marsh silenced those who had contentious queries."

    "
    What I witnessed at this event & following the receipt of information
    received following it, I have to conclude that the Sussex/Kent Society does
    not represent those with M.E
    (as opposed to those with a primary diagnosis
    of depression, chronic fatigue etc). Worse still, they may be seriously
    misleading and misinforming certain individuals and other interested
    organisations about this subject
    - much to the misfortune of those who
    desperately need and deserve better representation and treatment for their
    illness."

    A sad reminder of how £8.5million allocated to ME Services were mis-used thanks to AfME and others.

    full post here: http://forums.prohealth.com/forums/...ort-on-kent-uk-m-e-medical-conference.109405/


     
  14. Barry53

    Barry53 Senior Member

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    Is there a medical recognition of the notion of "burnout", and if so provide a link or two please. If there isn't, that maybe give me some pointers.

    I'm guessing the burnout situation is where someone has run themselves down both physically and mentally, due to a excessive activity with insufficient rest or sleep, with severely depleted energy levels. The key differentiator I imagine, is that their underlying biology is still intact, and can still process energy correctly once the abusive activity pattern ceases, and they do the right things to reverse the situation.

    If you have ME (no matter what its etiology), then the above recovery can never work, because the biological energy-processing systems are themselves damaged in some way, and may well be further damaged; GET itself potentially an additional abusive activity.

    I can believe that if what you are really suffering from is burnout, then you could still end up in a latched condition, but a very different one to that of an ME sufferer. With burnout, you may be stuck in a weakened physical and mental state, needing to really push yourself to get your body to reestablish itself - processing energy as per normal biology in order to achieve this. Some people may well need help to get themselves through this.

    But if you have ME, though the scenario may well seem incredibly similar to the above, the vital difference will be the PwME's biological inability to process energy properly; forcing it to try when it is biologically incapable is when disaster can strike. Treating two different illnesses the same, just because they present with very similar symptoms, is one of the well known hazards of medicine. This is why patients are told to never share medicines just because they think they have the same condition. The advice of course normally is: go and see your doctor! In this case, in the current climate, it seems to be avoid at all costs.

    This is where really good case definitions are so vital. An interesting trial might be one that attempted to distinguish unequivocally between burnout and ME - I imagine PEM would be a clearly distinguishing symptom. I strongly suspect PEM is the symptom of a damaged energy-processing biology, and should therefore be a key differentiator (maybe the only significant differentiator?) between burnout and ME.

    Observing my wife with her ME, the rate at which she can convert energy seems to be severely reduced, and so as each small energy reserve is depleted, it is not replenished anything like as fast as a healthy energy-processing biology would do. And if all my wife suffered from was burnout, she would have been up and running again (literally) many years ago, soon after she went down with her ME, because she pushes herself more than enough. In fact I suspect that when PwME pace themselves, the mental and physical challenges they are overcoming to achieve that, are way more than needed to recover from simple burnout.
     
    Last edited: Aug 27, 2017
  15. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I think the key is around the type of recovery and what happens when you exercise. However it also has to do with what happens when you rest and get more refreshed sleep. If you eventually slowly climb your way out then you probably have something other than CFS/ME. If you get good sleep and reduce activity and when you start trying to climb out, exercise intolerance puts you back to square one then you probably have CFS/ME.

    One would then conclude that if you have CFS/ME the chances of recovery are zero. However by all accounts there are periods of remission, which means that people can appear recovered or stable and lead a relatively normal life for a period of time.

    If you have a relatively short period of symptoms and then go into remission quite quickly (say within a year), it could appear that you are cured but really you are kidding yourself and hoping that the inevitable relapse will never happen?

    I guess what a remission feels like is mainly to do with how much of your former life you recover?

    I'm not sure what has happened to Martine McCutchen but one thing is for sure, listening to her various accounts, she doesn't seem to know either. She certainly seems to have been through the media circus and not come out of it particularly well. Perhaps she has mild ME and is in remission but can't articulate what is going on, or perhaps she has something else?

    I dislike the term "burn out" since it has the same derogatory and discriminatory tone as "yuppie flu", (I find it especially distasteful when used on sites like PR..... two wrongs don't make a right and all that).

    I prefer adrenal fatigue or something more sympathetic to the patient who after all is only a victim of the random healthcare system like we all are. I would not like to judge whether MM has adrenal fatigue, depression or anything else with what little information there is available.
     
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  16. Barry53

    Barry53 Senior Member

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    @arewenearlythereyet: this is why I asked for a more medically correct terminology for what many well respected members of PR speak of as burn out. And I'm not so sure it is derogatory? Sounds like a pretty valid analogy to me - just not for ME. But in fairness I'm not in a position to know if some people say it in a derogatory manner. I used it because I don't know what a better terminology is. I would only want to use an alternative name if there were some consensus, not merely opinion.
     
  17. AndyPR

    AndyPR Senior Member

    I agree that describing someone as suffering from burnout doesn't necessarily mean that it's being used in a derogatory way, it will all depend on the context.

    As a completely random example, Medscape has this article, http://www.medscape.com/viewarticle/883134, that talks seriously about physician burnout, so hardly being used as a derogatory term.
     
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  18. Barry53

    Barry53 Senior Member

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    Same for design engineers.
     
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  19. ladycatlover

    ladycatlover Senior Member

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    I've always thought of burnout as being a problem for high level athletes. Same really as over training syndrome?
     
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  20. Barry53

    Barry53 Senior Member

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    I guess it's another one of those very ill defined terms. On reflection, when people I know have used burnout in relation to design engineers I don't think it is the same thing at all ... More about losing creative ability and motivation. Retract my earlier statement!
     
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