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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. snowathlete

    snowathlete

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    Always been pretty impressed with Shepherd from the things I have read and seen.
    One hopes that he secretly watches forums like these and reads that we (the real ME community who arent 'militant' or 'stupid') really appreciate the work that he and some others do for us.
    Firestormm, Jarod and Sasha like this.
  2. Quilp

    Quilp Senior Member

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    He looks a picture of good health, taking regular walks, swimming and plodding along. Given the fact that he 'paces' himself I am to assume he is, at least to some extent, still afflicted by M.E.; but is this the reality for those living with this ''severely disabling disease'' ? Is this what we want the world to see ? What we want the world to hear ?

    Why mention the ''some on the militant fringes'' ? It isn't ''some'', it's hardly any of the seventeen million that have this disease. Why draw attention to something that the Wesselys have grossly distorted ? Why ?

    Why mention Dr Max Pemberton ? What purpose does that serve ? Why ?

    Why mention the XMRV debate ? ( unless to say he knew all along ) We have moved on, why not mention Lipkin, one of the worlds most renowned scientists who has stated that this illness is of biological origin ?

    Why is the illness a ''mystery'' ( suggestive of we 'don't have a clue' ) when we have thousands of papers showing biological abnormalities. Not conclusive, of course, but a ''mystery' ??????

    We don't get many chances to put our best foot foward, but when we do, we need those who want to help, to weigh and measure every word. How much of that article is really new; how much of that article really helps us ?

    The article talks about ''yuppie flu'' and for a moment I thought this article really was from the 80's

    I am sure this has afforded some semblance of encouragement to others, and I do not wish to take that away from you. I genuinely mean that, but I cannot help but think that this was yet another missed opportunity.

    Kind regards, Mark

    Forgive me i'm carashing, I need a break. I am grateful for Dr Shepherd for at least trying, but I am sorry we deserve better.
    GracieJ, Tito, Countrygirl and 4 others like this.
  3. Sean

    Sean Senior Member

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    Shepherd is one of the few genuine heroes in this whole dirty business. The treatment he gets from some – including from some of those allegedly acting in patients' interests – is both disgusting, and highly counterproductive to the genuine interests of patients.
    Sing and Sasha like this.
  4. Stukindawski

    Stukindawski

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    I assume he had to address Pemberton because he was doing a story for the Telegraph, better to play the game than not get printed at all

    I think it's fair to say that the disease is still a mystery, that is the effect the psychiatric lobby has had by cornering funding and a presenting a poor theory about aetiology. What's not a mystery is that patients are genuinely suffering, have measurable abnormalities, dysautonomnia, pots etc.
    Sasha and Firestormm like this.
  5. redrachel76

    redrachel76 Senior Member

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    I had the same feelings as you on those 2 points. Particularly on the photo of him walking a dog. I'ed do anything to be able to have a pet dog and be able to walk it everyday or do basic upkeep, bath it etc... His illness severity sounds like a joke to me or at least is not representative. He should have emphasised that his illness is in the lighter sphere.


    They always have to get that in don't they? G-d forbid anyone forgets that name.

    Sorry I'm bitter. I was going to keep quiet but Quilp stating his opinions gave me enough courage to get my feelings out. While those 3 points in the article really annoyed me, on the whole it was a good article and better than nothing.
    GracieJ, justy, Jenny and 1 other person like this.
  6. GracieJ

    GracieJ Senior Member

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    Shepherd didn't write it and probably doesn't like it any better than anyone else here does, nor did he have editing rights to the final copy. Overall, it is really nice to see the tone has changed considerably from earlier articles.

    So if someone regains function, they need to hide out so they do not inadvertently or inaccurately represent the "community?" I was thinking more in terms of how wonderful it is that we have a doctor on our side who understands this condition.

    I've regained a lot of function, and it has taken me years to be brave enough to share my experiences with other ME/CFS patients because of the attitudes toward my progression. On the scale on this site, I was down to a 2 for a long time. How I am now is not representative of what has been, but I am not going to stop sharing because I feel better, whether people misinterpret my situation or not.
    Sing, barbc56, Valentijn and 3 others like this.
  7. Jarod

    Jarod Senior Member

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    That's part of the major stimatism of our disease. It doesn't accurately portray what we experience. I've been totally bedbound before and that really is a bummer. That is miserable.

    Fortunately it was short lived for me due to a temporary setback. When I became disabled from working I could still run, but couldn't think. I can see how somebody could swim, bike, or walk a dog. It just matters what one's limits are. He may research in the morning for a couple hours, then swim or walk at night a few times a week. I would guess that most days include a big couch session and nap though...

    The real question is can one get up at 6am and make it to 6pm while being productive enough to produce at work like healthier people can. For me, it is a definte no. everything works for a little while before one just hits a wall and can't even function.

    edit: it's not the fatigue that is most disabling for me, although I'm the fatigue will defintely prevent me from walking far. It's the pressure in the head and dizzyness, and all the sensitivties to stimuli.
    justy, GracieJ and Firestormm like this.
  8. Firestormm

    Firestormm Senior Member

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    Morning Mark,

    I only got around to pasting one of Dr Shepherd's subsequent comments, made on Facebook, and that related to similar comments surrounding his mention of the 'militant' activity (or however you want to phrase it). That appeared earlier in this thread (page 1).

    Here are a few more comments relating to his dog-walking ability, etc. following similar comments and issues raised by others. All taken from ME Association Facebook page: https://www.facebook.com/pages/ME-Association/171411469583186

    In no particular order (because I'm shattered) but numbered for reference:

    I think that's the lot :)

    Note: This 'purple booklet' as can be seen from the information, is what I would deem 'the missing link' in terms of what a GP (doctor) has available to keep him abreast of ME, what it is, what it isn't, and more importantly - how to help manage the symptoms (well some of them).

    I don't have any problem in pushing this booklet to anyone. It represents a major 'failing' in the NICE Guideline - something that I think Dr Shepherd was referring to in his article 'not fit for purpose' :)
    GracieJ, Valentijn, justy and 4 others like this.
  9. GracieJ

    GracieJ Senior Member

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    Read the original article carefully. Unless it's in quotes, it probably is not Shepherd's voice, but the voice of the reporter compiling the pile of information she had into as concise and coherent an article as she could get. This is an opportunity to continue educating the media. I don't blame anyone on here for venting over the article's barbs, such as they were -- I think we all noticed and winced. The picture is changing.

    I wish I had your brain, Firestormm... I would never have come up with the information you just posted! Good stuff, clarifies the discussion here.
    Valentijn, Bob, redrachel76 and 2 others like this.
  10. Firestormm

    Firestormm Senior Member

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    I was quite impressed with myself this morning Gracie! Rubbish night and started on here at 04.30am :eek: Typical I'm afraid. Still, back to me bed in a wee while :)
    GracieJ likes this.
  11. Quilp

    Quilp Senior Member

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    Hello Fire et al, thanks. I feel really bad criticising anyone that has had the courage to speak out on our behalf.
    I am not going to go off on one again ( ok maybe I will ) but why oh why mention ''Shepherd himself became the target of hate mail'' ? Who does that serve ? PR for us ? Or PR for the DT ?
    Thanks for the Facebook comments Fire, much appreciated. I wonder how many readers will go from that article to Facebook ?

    Yes of course calling NICE not fit for purpose is very welcome, i am quite wrong not to mention the positive aspects of this interview, but I can't help feeling they are overshadowed by so much that I wish had not been said ( regular walks - court of public opinion : ''look that's what Mark should do'', and ''why doesn't he go swimming also'')
    Goodness knows what my GP made of that, or what the DWP might make of it, or the Disability tribunals, much of which is subjective.
    There was a plethora of other areas that could have articulated the dreadful way in which we have, and continue to be, regarded by the medical profession even putting aside our suffering.

    Ok that's enough from me ( this time I mean it ! )

    Hello Stukindawski

    My wife says she has no idea why she chased after me for so long before agreeing to marry me - that's a mystery
    I told her it was because I didn't have the energy to run anymore - that's a biomarker :)
  12. Enid

    Enid Senior Member

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    I tend to agree with the all the thoughts and questions here but as a 12 yearer (will never be well) this article has simply broken through the barrier of the Wesseley school "all in your mind" at last. It has taken decades to remove the stigma with much work by a few,though often behind the scenes. Together with the Independant article there is cause for much celebration although the UK is still so far behind other countries. The reference to a VERY SMALL number of so called militants rankles (I recognise one or two he refers to - but that is history) - in the light of the whole article I congratulate Caroline Lambert and Dr Shepherd for their superb - almost exposee - of the real ME in the UK.
    GracieJ and justy like this.
  13. Firestormm

    Firestormm Senior Member

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    Mornign Enid,

    I sure hope that it remains 'history' and that this article doesn't prompot similarly stupid outpourings to the Telegrapgh. We need momnetum now not retraction :)
    Enid likes this.
  14. Enid

    Enid Senior Member

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    Morning Firestormm, - I think one or two he refers to are out of the picture now, press provocation should cease as they should be. As you say now these articles are out, the chief barrier removed, momentum (there is so much overseas research available) is surely the way now. Encouragement all round. (hope my GPs read the article).
  15. Sasha

    Sasha Fine, thank you

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    One point not mentioned here is what an advantage it is to us to have Doctor Shepherd publicly discussing his own ME so that doctors reading the article can see that it can happen to doctors. I think that alone helps to get credibility for our illness among doctors, many of whom don't think it's real until it happens to one of them. And of course the public are going to be more impressed by a doctor having the disease than an ordinary patient - much harder to dismiss.

    I thought it was also strong that Dr Shepherd was reported as having got sick in the late 70s and as still being not fully well - that is, over 30 years later - and having to pace himself to do the things he does. We've had plenty of reports in the media already of very sick PWME and of people improving so I don't think that Dr Shepherd's partial recovery is going to skew things in the minds of the public.

    I think we're very fortunate indeed that a doctor, who would have had a lot to gain by keeping quiet about having been ill and just going back to business as usual when he was sufficiently recovered, stays with us in the game and fights so hard for us. I'm very grateful to him.
    Bob, SOC, Sing and 8 others like this.
  16. Firestormm

    Firestormm Senior Member

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    Shepherd is on Radio Marlow this morning. Long interview. About an hour I think. Am listening now: http://player.marlowfm.co.uk/

    Vrey good coverage. Lots about the biomedical aspects of the condition and research. Will need to find an iplayer or recording I think and try to do a transcript of something. Will see if MEA can arrange for that to happen. I mean an HOUR's air-time for pete's sake!

    Oh. 45 Minutes then. But still. 45 MINUTES of air-time! Unprecidented :)

    Heck - Rituximab being discussed now...!

    Well. That was good. Good interviewer too. Such a shame this wasn't a national radio station - but will try and get a recording made available.

    What's that about all publicity is good publicity :)
    Valentijn, Enid, Sasha and 2 others like this.
  17. Jarod

    Jarod Senior Member

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    Thanks for those additional comments. These couple little ommissions entirely changes the picture doesn't it?

    That perfectly illustrates my frustration with the media. Leave a little out here and leave a little out there. Add in a picture of him with his dog. Add in some militant comentary. Bingo now the picture has changed.

    Yep we got them. The public won't care if we cut "entitlements" to those dang militants and they end up homeless. Most of them are out swimming, walking their dogs, anyways....

    I don't email the media because I think the editors are like artists and know exactly what they are doing. I've met a former scientific journalist(he had phd) and he basically told me that was the reason he was no longer in the business because felt too restrained about what he could and couldn't write.

    Remember that other article from a couple years ago with a 70 year old lady watering her plants in her maticulously landscaped home and running beach with her dog? Same kind of image. Most people with cfs have yards with weeds dangit. :) They can't afford a landscaper and eating is always number one on the priority list.

    I'm happy with his efforts and the whole deal is not in his hands. But how can one get research money or disability benefits when the image is everybody is a bunch of militant dog walkers?

    This is why we have been so hindered from progress and funding in my opinion. We are not dealing with transparency and that confuses the issues to those decision makers and public opinion.

    Thumbs up for Sheppard. Things are a mess and we all know it. Many good people are doing the best to change the system and do research. Thanks.
  18. Enid

    Enid Senior Member

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    Yes I agree Jarod - the issues of the severely afflicted/continuing health decline and rituximab seem to have been left out too. But for starters the headline ME isn't all in the mind resets the baseline to correct all the misinformation and move us on.
    Firestormm, redrachel76 and Jarod like this.
  19. Bob

    Bob

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    I understand your concerns, Mark, but it helps to keep in mind the context in which it was written.

    Remember that this is a Telegraph story, and was not written by Charles Shepherd.

    If we want to get the media on board, then we have to work with the media, and to deal with the subject on their terms. If we just approach a newspaper, and say "I want you to say this, this and this, about ME", then they will just ignore us.

    Newspapers need a 'story', and they like to include topical subjects, and controversy.
    At the moment, the 'controversy' is the 'militant patients', and the 'XMRV' story.

    It's no mean feat to get a story like this published. And I think it's the best we can hope for from the Telegraph at the moment. Hopefully there will be more to come. There was also a sympathetic story in the Independent this week:
    http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

    In terms of Charles Shepherd's health, not everyone with ME is bedridden. There's a wide range of disability. The more that articles like this are published, the more that the public will begin to understand the nature of ME, and the different levels of disability involved. I think it's helpful if the public understand that some of us might look well, and lead apparently near-normal lives, but that doesn't mean that we are fully functioning. Obviously, more stories are also needed about severely affected patients.

    Re the 'militant' issue, I don't find that particular phrase helpful either, but this is the Telegraph. There's no way that they were going to leave that issue out of the story. It does seem clear that there is a small number of people who do upset various researchers, scientists and doctors etc. And some of these people are considered 'abusive' or 'harassing' to those at the receiving end. I'm not surprised about this, and I fully believe that it's a reality. Whether a small number of people are actually 'abusive' is a subjective issue, and only those at the receiving end can really make that judgement. I don't think it's something that we can argue with really.

    The 'militant' issue is obviously being used by some people for their own purposes, to paint us as an unstable patient group.
    We can't do anything about that situation, and I think it's unavoidable, and so I don't think it's worth paying too much attention to it.
    The rest of us can continue to engage with the issues reasonably, if we think that's the right approach.

    Edit: Oh, I've just seen your other post, Mark...
    Please don't see my post as being aimed at you personally, Mark...
    I was just making general comments in response to your concerns.
    I do understand why you are disappointed with the article, but it is the Telegraph, and that's the best we can expect from them at the moment...
    Hopefully they will publish more sympathetic articles in the future.
    Charles Shepherd spent an afternoon at the Telegraph offices, with the health editor, and that can only have done us all a huge favour...
    It means that they have now met someone with ME, who is very reasonable, in a position of authority, and not suffering from a psychiatric illness. He also came armed with research evidence etc. etc.
    Maybe they won't dismiss us or insult us so readily in the future, now that they have a 'face' to represent the illness.

    SOC, GracieJ and Jarod like this.
  20. Bob

    Bob

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