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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Daily Telegraph: ME isn't 'all in the mind' but it's still a mystery

Discussion in 'General ME/CFS News' started by Firestormm, Nov 26, 2012.

  1. Firestormm

    Firestormm Guest

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    26 November 2012: Daily Telegraph: Health: http://www.telegraph.co.uk/health/healthnews/9699911/ME-isnt-all-in-the-mind-but-its-still-a-mystery.html

    Additional spacing added by me.

    Well. What do you make of THAT then guys? Bloody good stuff to see. And in the Telegraph no less :)

    I don't think you can leave comments unfortunately - not surprised though. Other articles in Health permit comments...

    Anyway, the above is appearing in the hard-copy edition too I understand.
     
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  2. Shell

    Shell Senior Member

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    I wish the Telegraph would unequivically condemn the attitude and recent article by Max Pemberton, but hey-ho.

    This is a good sign from the press. At last.

    On the ME name question - I was under the impression that some PMs that dx ME as cause of death did find inflamation of brain stem and spinal cord.??? Or they were riddled with infection at any rate, which would cause inflammation.

    But then if MAST cells and mitrocondrial disorders cause ANS disorder and is at the bottom of ME perhaps many patiesnt don't have spinal fluid problems because the problem is elsewhere.
    Perhaps if the money had been spent on genuine research we would have a descriptive name for our grottiness already.
     
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    see: http://forums.phoenixrising.me/inde...-of-the-issue-dorsal-root-ganglionitis.20331/

    The dorsal root ganglions are outside of the spine. And it's just a single autopsy, one can't extrapolate from that to a whole patient population, there's no autopsy of an M.E patient that has led to an assignment of cause of death. This whole issue is rapidly growing into a false and often repeated meme. There seems to have been just a single case where a UK coronor as has asigned a death to 'M.E' - it's not clear what that means (it could even imply psychiatric involvement) and is a legal judgement rather than a precise medical one. It would have no implications for any other case.

    M.E was always a speculative name and the only sensible position now is to argue (as Shepherd has) that the CFS designation hasn't helped but medicine needs to move forward irrespective of labels, not because of them.

    IVI
     
  4. Enid

    Enid Senior Member

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    It is good at last to see ME given "voice" by Caroline Lavender in the Telegraph. Knowledge, diplomacy and caution come across - Charles Shepherd being a sufferer and a Doc. Let's hope this is the end of all in your minders and negative press at the very least, and research/treatments pickup in the UK.
     
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  5. Firestormm

    Firestormm Guest

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    That would be cool :)

    Personally, I think that reasoned articles like this (and he did apparently spend some considerable time talking to the journalist about Rituximab and other things that never made the article) can only help to counter any other impression gained by other more inflammatory articles.

    We need I think to reset the tone. Get back to considered reasoning and less speculation based on 'interesting' findings. What I like reading is 'Reviews' and I would get a lot I think from a similar review of ME research. Rather than specific publications of 'interest' more along the lines of what appeared in this article - but with more content.

    Such a review could be written and published by e.g. the Lancet I would think. So long as it was reasoned and not pushing any one opinion. Something to help people know what the situation with research is now - as well as what is wrong with getting the basics in place and the lack of funding etc.

    Note: Shepherd has made several addition comments on the ME Association Facebook page for those who are interested. I can't be arsed to paste them here at the moment. He also addresses the 'encephalomyelitis' and autopsy findings - again.
     
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  6. Shell

    Shell Senior Member

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  7. Sasha

    Sasha Fine, thank you

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    I completely agree- that's exactly what we need.
     
  8. Enid

    Enid Senior Member

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    @ Firestormm - 5 - there is a problem (I see on Facebook too) that whilst welcoming this article and the points it covers so well, some disagreement over CS use of the term encephalopathies as opposed to encephalitis. Checking definitions I tend to agree, but then I was totally bedbound with polio like symptoms (amongst others eg sudden appearance of chicken pox), Taken together with abnormal brain MRI scan I'm more than certain of viral involvement and an encephalitis (my Neurologist too) But I guess that will resolve itself when all the facts are known.
     
  9. snowathlete

    snowathlete

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    A fair article on the whole.
    If all articles were written in a reasonable manner like this, that would be a great leap forward. I think Caroline Lavender did a good job overall. Hopefully she will get some positive feedback from the ME community and be interested in writing more about the illness.
     
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  10. Firestormm

    Firestormm Guest

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    I won't go into the definitions debate again, Enid. I was diagnosed with viral encephalitis along the road to ME. From what I recall (and I was thinking about this the other night), there was very little done in terms of examination or indeed specific treatment. At least not that I can recall and I was in hospital for some of this time also.

    I am not proficient to answer this question, but I can't help but think that 'brain inflammation' is transitory. That encephalitis is treated - if at all - with anti-inflammatories. And that it either passes or you die. Funnily enough I have never ever looked into this. Can't believe I haven't. Thanks for raising it. Might do a thread - if one hasn't been done already somewhere :)
     
  11. justy

    justy Senior Member

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    I think this is a great article for a newspaper in the UK to run. Well done to Caroline Lavender for taking the issue seriously. If we could continue to have it discussed in this manner in the media then it wouldnt be long before PWME were taken more seriously and given more support.

    I wonder if this article is a taste of things to come as more and more research comes out, such as Fluge and Mella, that can;t be ignored. Some serious backpedalling will need to be done in the UK, and they may be beginning to set the scene? i do hope so.

    Justy x
     
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  12. GracieJ

    GracieJ Senior Member

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    I'd still like to know who constitutes the "militant fringe."

    All the more reason for all of our posts, e-mails, comments, etc. to be as calm, polite, and rational as possible.
     
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  13. Sasha

    Sasha Fine, thank you

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    By the way, I think we should click on that link and visit the Telegraph site so that the editors can see the traffic it's generated - it will encourage them to do more good-quality stuff.

    Good to see they've provided a weblink to the MEA.
     
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  14. Jarod

    Jarod Senior Member

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    That statement about the "militant fringe" is one point in the article that seemed a bit ridiculous. "Militants" is one of many terms fabricated by journalists to denigrate people in the mid-east and to drum up public support for illegal wars/drone strikes.

    Those nasty fabricated terms (used in media and not casual conversation) serves no other purpose than to denigrate in my opinion.

    If a journallist wants to whine about complaints to their articles, they should create a seperate article for that and addres the issues.

    The article as a whole was fantastic though. Dr Charles Sheppard covered that militant nonsense with this statement.

     
  15. Firestormm

    Firestormm Guest

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    From Dr Shepherd on Facebook in reply to similar comments:

     
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  16. Firestormm

    Firestormm Guest

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    Of passing interest...

    Mum just returned from seeing her own GP. Who said 'Have you seen that great piece in the Telegraph today?'

    I'm thinking I might switch to her doctor although I see my own on Wednesday - so shall see what he says (or not) :)
     
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  17. Enid

    Enid Senior Member

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    I see VERY SMALL number quoted Firestormm and ME has had such a long history here in the UK - perhaps now Dr Shepherd has spoken out - ME isn't all in the mind - is crucial in the whole sorry saga.
     
  18. Stukindawski

    Stukindawski

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    Dr Shepherd's choice of words is interesting. He mentions a 'stupid manner' in the way they criticise which is evocative in a way. He didn't explicitly say what people were saying is always wrong, but perhaps the subtleties of how one interacts with those who are important to the representation and mediation of mecfs issues needs to be heeded carefully. I've never been an A1 member of the Dr Shepherd fanclub, but my attitude has been changing somewhat lately to mecfs issues in general, and whatever you think about his opinions on mecfs, he has got about as close as anyone to breaking through certain walls that form the barrier which prevents our disease from being dealt with properly.

    Abuse is a trickier word and begs definition. The line between challenging and abuse can only be drawn with the kind of compass that requires a microscope to read. There is also a problem with over highlighting it because when you step into the public eye, in every bucket of people, there's a drop of idiot, whether they have ME or not. I'd be surprised if every published journalist on the internet who has written something remotely evocative hasn't had some kind of bogus email.

    I would like to see Dr Shepherd respond to this same question (as he has to, as it seems the gateway into any discussion about mecfs starts with doughing one's cap to mental health issues) by naming the many Scientists whose work challenges the psychosomatic theory on ME and who are actually quite agreeable and rational individuals. A stable of respectable identities whose work questions the psychosomatic basis for mecfs (Dr Shepherd at least carefully made the distinction between aetiology and co-morbidity) will help de-construct the misrepresentation that the SAS/SMC has stained many hard working, rational and upstanding individuals with.

    But Rome wasn't built in a day so, congratulations and thanks to Dr Shephard for his efforts. Putting one's actual name and face to something is an act of bravery in itself ;)
     
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  19. Firestormm

    Firestormm Guest

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    Studindawski I am always amazed by the amount of effort that goes into word analyse particularly with comments relating to matters such as those you touch on above. The analyse of 'abuse' 'militant' etc. etc. :) These are to my way of thinking expressions - generally - of disgust over behaviour. They are personal. Hell, I might call certain people 'idiots' too (not that I have - or maybe I have - can't remember off hand) but I wouldn't expect an analysis of my choice of word. I'd rather debate the context. And I think that this particular 'issue' has been done to death e.g. here: http://forums.phoenixrising.me/index.php?threads/negative-publicity-on-pwme-the-motive.19588/
     
  20. Esther12

    Esther12 Senior Member

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    It's a difficult job to try to help CFS patients in the UK, but I think that Shepherd and MEA do a pretty good job. I recently signed up to MEA. I'm generally pretty clueless about different ME organisations, and the politics that occur there, but most of what I see from MEA is good and reasonable.
     
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