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DR SCURR 7th June 2010 ....at last I've been convinced that ME is real

Discussion in 'General ME/CFS News' started by pollycbr125, Jun 8, 2010.

  1. pollycbr125

    pollycbr125 Senior Member

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    Apologies if this has already been posted .

    http://www.dailymail.co.uk/health/article-1284795/You-CAN-beat-misery-piles.html

    scroll to lower down page and there is this article .

    By the way... at last I've been convinced that ME is real :D

    ME can be difficult to diagnose
    I admit it, I was wrong. For many years, I - like many of my medical colleagues - have blamed ME on psychological or behavioural causes.
    Then, last month, I attended the 5th World Conference on ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
    There I spoke to a number of experts who were emphatic that the evidence shows the condition really does have a viral origin.
    This has never previously been clear - before, there had been only hazy circumstantial evidence. There have been two problems really; first, identifying the cases - who does and who does not have ME/CFS?
    The second, how to tell if any identified bacteria or virus is actually the cause of a disease, or merely there by chance (and not actually involved in the disease process).
    When it comes to diagnosing ME, it's always been difficult distinguishing it from another common but hard-to-prove condition, depressive illness. Both involve the major symptom of fatigue - a gross tiredness unlike any other, such is its overwhelming severity.
    Both are associated with sleep disturbance, impairment of memory and concentration, emotional symptoms - indeed, there are many in the medical profession who have long considered that those who believe they have ME/CFS have a form of depression and are in denial.
    But there is one challenging difference: those with ME/CFS have a flare of their malaise lasting at least 24 hours after physical exertion, whereas people with depression - if they can manage exercise - tend to be briefly a bit better.
    At the conference, a number of plausible ideas were advanced for the condition, including one from Professor Brigitte Huber, an immunologist from Boston. She explained that 8 per cent of all the DNANA in our bodies is basically a form of infection - it's become incorporated into the genetic code of our cells.
    This infection 'gene' gets switched on whenever you catch a common viral illness - such as glandular fever or herpes simplex (the type that gives you cold sores). T his triggers the immune system to pour out vast quantities of chemicals which cause widespread effects such as muscle pain and exhaustion.
    In most patients, this reaction stops after a week or two as they recover - the immune system puts the infection gene back to bed.
    But in a small number of people this doesn't happen, so the immune cells continue to be activated, causing grief, and the illness becomes ME/CFS.
    Knowing why this happens still needs to be explored. But it is an exciting time and some solace to those who have this awful illness and have never been believed. :Sign Good Job:


    Read more: http://www.dailymail.co.uk/health/article-1284795/You-CAN-beat-misery-piles.html#ixzz0qFsz0NLm
     
  2. Stone

    Stone Senior Member

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    Wow!. Just....wow.
     
  3. willow

    willow Senior Member

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    Sensational. Hurrah!

    Shows that these conferences really can do some good. Also that even those who seem to have a firm view, even for 30yr,s can be open to change it and humble enough to say so. I think we try and tap in to the humanity and goodness in everyone, to believe it even when it seems unlikely.
     
  4. helsbells

    helsbells Senior Member

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    WOW indeed now if only we can get billing above a piles article :D
     
  5. Athene

    Athene ihateticks.me

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    Nice to see some humility and a public acknowledgement like this. Like Helsbells I am just a bit disappointed that we come below @rse grapes, and old men's snotty noses.
     
  6. helsbells

    helsbells Senior Member

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    :Sign giggle: sorry I am so childish
     
  7. Adam

    Adam *****

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    Whatever one else said.

    Nice one Dr Scurr.

    @rse grapes my @rse.
     
  8. Min

    Min Senior Member

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    This is wonderful, the Mail are consistently good in their articles about M.E. & well done to Invest in M.E. for hosting the conference.

    if you want to write to the editor it's:

    letters@dailymail.co.uk

    (enclosing your full address and phone no. which will not be published )
     
  9. free at last

    free at last Senior Member

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    Its Nice to see someone in a position of media power to stand up and say i was wrong, when theres so much negative attitude still. Lets hope this trickle of common sense ( provided by scientific evidence ) turns into some further GPs thinking ok maybe ill have another look at the evidence, Doctors can be swayed by other doctors, especially when one was intially on the negative side, as other GPs may become interested what changed hes mind. And look for that evidence themselves.

    Many thanks goes out to doctor Scurr to be brave enough to say he was wrong. Lets also hope this leads to interest by the doctor, who may well talk more and more about this in the media, It might be worth sending some emails as suggested above, Hopefully not to heavy ( will have to remind myself of this if i do ? ) but i do think a brief message of thanks and maybe just a little bit of the real world here, as the post about flu symptoms ( thread started about those that didnt get flu symptoms ) but soon turned into lots giving statements that this side to the illness for a lot of people is very important, it connects a lot of sufferers, and may also in many cases connect a cause to the illness, as was said by doctor Scurr a virus is involved. I think reading this thread, once of the opinion of common sense, and evidence that he now finds persuasive.

    Really makes all those words so much more powerful i think. I am a little amazed though that it takes so much evidence before some doctors really sit up and take notice, when the sad deaths of Sophia Mirza and lynn Gilderdale should be the only evidence that this country and medical practices need to know about. One has to only look at these poor women, to know something is very wrong with our present understanding, and medical reaction to this horrible illness. I find that aspect shocking the most, and to be honest quite angry. God knows why these deaths havent led to major medical inquirys. And funding, and a turning away from the likes Of Mr Wessley and hes believers. Wonder what simon thinks of this statement, not pleased i guess. But hey its made my day, Thanks for posting this.
     
  10. V99

    V99 *****

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    Hurrah & Wow! Congratulations to Invest in ME for this achievement, and thank you Mr Scurr.
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    This doctor evidently already had an open mind. He attended the conference.

    And as he said, the symptoms from just a cursory examination are similar to depression. We know better. Our family knows better. We live with it. And a clinician who sees many CFS patients knows it. But the rest of the world who only gets glimpses or sees it from afar, it looks the same as depression.

    And the difficulty in defining the cases contributes.

    Just know, we are dealing with ignorance, bias and egos. We need to just keep putting forth evidence, not name calling, not attributing ulterior motives or unfounded theories. The best weapons we have are evidence (as this doctor said) and our reasonableness.

    Now, just to say, those with CFS who kill themselves do not show they did not have depression. (not that I am saying they did.) Suicide is very common among people with depression. Also, it is not unheard of someone making themselves sick by their fear of stuff that will help, even food. (Of course, I don't believe that about Sophia. Just saying a biased doctor can take the same incidents and twist it to fit their story as well as those who believe it isn't psychological have their story.)

    The evidence is in the research studies. As I have said before, I think researchers are far ahead of the clinicians in knowing what is going on in the body. And that seems to be the biggest failure. Why the research information is not getting in to medical school and clinicians is where the problem is.

    Tina
     
  12. klutzo

    klutzo Senior Member

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    There was an article in the Mercola Newsletter awhile back which said that new medical knowledge is now taking an average of 17 YEARS to get down to the level of the practicing clinician. After all, drug company reps are not going to impart this info, and doctors are running all day long. I don't see how most of them can keep up with their own specialties, and in fact, evidence shows the younger your doc is these days, the better, because they can't keep up once they leave medical school. How to fix this? I don't know, though I have some ideas......too long to express here.

    I want to add my voice to those who salute Dr. Scurr for admitting he was wrong.

    What bugged me about what Dr/. Scurr said was that it once again has me questioning whether I really have CFS, or "just" Fibromyalgia and Lyme. I got sick right after a flu, and I have complete exocrine pancreatic failure, which according to Dr. Cheney is the #3 cause of death in CFS patients. It is not even on the list for Fibro and Lyme patients, so I felt sure I had CFS. However, It's also a fact that if I don't exercise for two days in a row, I feel like crap. I definitely feel better after exercise, as long as I keep it within my limits (no more than an hour, and keep the aerobics part very light). Isn't there anyone else here who feels that way?

    klutzo
     
  13. paddygirl

    paddygirl Senior Member

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    While I am delighted to hear that he has come forward to say he has changed his mind, this does beg the question...where are their brains?

    Where I live, only the max points students get into medical school, I cannot understand why people like this do not know the history of medicine, and never seem to question the status quo. Are they just walking medical dictionaries or top class brains?

    Also, a few paragraphs in the article acknowledging the horrendous injustice done to people over the years would have been nice. And perhaps a call to throw money at research to mitigate medical professionals and governments gross failure to do what they swear to do in their oaths and manifestos.
     
  14. Exactly paddygirl. ME patients should resist the temptation to be happy for people with a low moral IQ who were mistakenly awarded the privileged title of a medical doctorate.

    ME has been officially recognised as brain disease since NASA launched it's Apollo space mission!

    To take this long to come on side is nothing but shameful.
     
  15. V99

    V99 *****

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    DysautonomiaXMRV, that's a good way to put it.
    So basically, 1969 was the first big impact on Government's around the world and the last. Can someone get what I just said to sound right, it's so wrong at the mo.
     
  16. bluebonnet

    bluebonnet

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    :D
    LOL!!!!!
     
  17. free at last

    free at last Senior Member

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    While i agree with Paddygirl whole heartedly, and it is shameful, doctors do see a lot of uncertainty in illness diagnosis, so who to belive ? mr wessley or mr Kerr ? while i dont agree its the right attitude to have, and to me seems downright stupid on there part,

    what is evidence for one is not evidence for another, not nice i know, but this can be a very cruel uncertain judgmental world we live in. Thats just something we have all had to learn to put up with, and help slowly change. I do think that change is happening, And still think to admit your wrong is a good thing, if only Simon would do this. But he seems of a different breed. yeah the worst kind. I will keep a open mind on what Dr Scurr now does with hes new outlook on those he disbelieved, Im hoping he does become more vocal over time, and actually help sick people and our cause for rightfull regognition. If this doesnt happen, then hes not the doctor he claims to be after i read about him, we shall see. But i guess its hard to condem the non believers, when you was one yourself.

    I notice he gives a lot of reasons why he couldnt tell or decide what the true cause was, almost as a way of excusing himself.Isnt this what we do when we feel guilty. to give reasons ? the reasons might not be good enough considering how much suffering has gone on. But i believe hes telling the truth. and probably much soul searching will happen to him. at least thats what i hope leads to a friend on board that can now help people. and speak out. Time to become more vocal dr Scurr. This is a welcome start, but hoping for so much more from him. I certainly agree though it did seem odd that this statement was like a after thought of the piles article. Not exactly trail blazing yet is he. I suspect he really does feel uncomftable with himself, like he didnt want to admit it. But couldnt help himself. lets watch now and see if hes truely the doctor i read about, on one of hes articles. I hope so. we need him more than he needs us, at the moment im inclined to think a friend has joined us. Lets watch and see.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree. Now doctors are going to have to start admitting ME is a real somatic illness after Lynn, Sophia, magical medicine, xmrv etc etc. He's smart to come out 'early' and say ok well it's basically like depression, so noone knew, oops. covering his @rse grapes and so he won't feel guilty or be blamed. He needs to really point the finger at Wessely et al. and call for appropriate funding and treatment.

    On the other hand, it is unfortunately usual to change your views in a public forum when you are a seasoned busy doctor, so I do give him a little credit. I do not blame the average gp doctor out there nearly as much as the likes of Wessely, CDC, NIH etc since the latter have relentlessly and quite cannily waged a disinformation war for decades that has been virtually unopposed by the likes of CAA.

    I reviewed about 200 med textbooks (and posted reviews of most on Amazon re their content on ME) and all but two read like a transcription of a Wessely review article. These are the references that doctors and med students turn to when a patient comes in insisting that he has this serious neuro-immune disease ME or "CFS". The texts tell him the patient is nuts and no further inquiry is needed. We, and especially our patient orgs have to come out louder in the medical fora 'calling out' these charlatans and those that parrot their lies.
     
  19. V99

    V99 *****

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    There was one part of the article that was out of order. Implying that if an illness is psychological or behavioural, it is not real. ME is a physical disease, but they are also real.

    After all these years of medics telling us that psychological or behavioural problems are real too, and there it is in black and white once again. Basically they discriminate based on bigotry, doesn't matter what the facts are.
     

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