The Guardian Newspaper Open Thread XMRV

Discussion in 'Fibromyalgia Main Forum' started by Rafiki, Oct 10, 2009.

  1. Rafiki

    Rafiki New Member

    Those in the UK, and those who would support them, please check this out...

    It seems the conversation cannot rise above accusations that the ME community behaves badly and refuses to accept a diagnosis of mental illness in order to avoid the associated stigma.

    This is so horribly wrong and unfair. If you are feeling eloquent, please do what you can to address this situation.

    Quayman, I feel your pain.

    So disappointing!


    PS I left a comment with a term that will identify me to any who know me here: diaguess, and the username: WistM

  2. Spinetti

    Spinetti New Member

    I'm not feeling eloquent today, and even if I were, I couldn't have said it better!

    Best wishes and thanks
  3. quilp

    quilp New Member

    Thanks for bringing this to our attention. I went on the site a few hours ago but i had to leave. I was disgusted by some of the comments, but not surprised.

    There is another news journal well known in the UK, but i am not going to give it anymore publicity. Once again they interview Simon Wessely for his opinions on this breakthrough. Why ? This isn't about a balanced debate, that i can accept; this is about generating much needed publicity for their magazine. The last time they interviewed Wessely in March 2009, they generated over six hundred replies.
    If you are in any doubt about how cruel these people are please look at the following quote. This is how they describe the illness :-

    'CFS is characterised by cramps, sleeplessness, weakness and headaches. It affects more than a million Americans and a quarter of a million Britons, yet its cause remains elusive'

    Does anyone recognise their illness from that description ? This is more than about sloppy journalism, this is about the numbers game. It is indefensible, unforgiveable and morally repugnant. There are already over seventy angry responses.

    Be very afraid of Peter White and his collaboration with Bill Reeves. In them you have the mother of all battles. Peter White and Wessely are very close. White is laying the groundwork before Wessely steps in in a big way. Please don't feel sorry for us in the UK, save your energies because these guys are coming and you're going to need all the help you can get.

    You have powerful friends in the states, the battle will be played out there with consequences for all of us. All looked lost until Uncle Sam came in all guns blazing. Thank God for the USA.

    Kind regards, Mark

    Kind regards, Mark
  4. AuntTammie

    AuntTammie New Member

    I posted comments....they are long and likely won't convince anyone who already has their mind made up, but I still felt like I had to try.....I did mention having dealt with mental illness, even though I know that some will probably chose to use that as evidence that people with depression and PTSD are more likely to get ME - I mentioned it bc I recovered long before getting ME and bc it helped to explain my point and to respond to what several detractors were saying........anyway, here's what i wrote....(oh and the things that are in between < > are things that I italicized on there):

    As one who has struggled with depression and PTSD and who became a counselor after recovering from both, I understand all too well what it is like to have a mental illness. Despite the stigma, I have no problem sharing what I have been through with others. I also believe very strongly in the power of counseling, including CBT.

    I have often wished that ME was a form of mental illness, because if it were, there would be more of a possibility of truly getting well. I can also tell you that when I struggled with mental illness, people were <i>more</i> compassionate towards me than they have been with ME. From what I have seen, the stigma associated with ME is worse than that associated with mental illness (and no, I am not downplaying the way that people with mental illnesses are often treated. I think it is horrible and undeserved. I am just relaying my own experience.)

    The reason that I do not want to be told that this is depression or some other form of mental illness, is that it is not. Insisting that it is, has led to treatments such as CBT and GET being used as the only treatments, and that has not only not helped, but has actually harmed many. And, it has not led to other, more effective treatments being found.

    If people with cancer, AIDS, or MS were constantly told that they had mental illnesses and were limited to treatments like CBT and GET, no one would question their frustration. No one would say that they were just afraid to be stigmatized and were causing those with mental illnesses to be further stigmatized in the process. That has nothing to do with their desire to "distance themselves" from mental illness, as someone wrote here. It has everything to do with wanting to find effective treatments so that they can get their lives back.

    That is exactly how ME patients feel. We have nothing against people with mental illness, and we can empathize with how they are treated. However, those feelings do not change what we have, nor will they make CBT any more effective for treating ME. CBT is effective for helping people to cope with having a devastating physical illness, but using it as a treatment for that illness itself is not effective and is seriously hampering the search for more effective treatments.

    Before getting ME, even when I was depressed, and more so when I had recovered from it, I had a much, much fuller, busier, more active life. I worked full time, went to school full time and got almost straight As, went to church, had an active social life, spent time with my family, and was very active physically. Among other things, I trained for and ran full marathons. I absolutely loved doing them. I also did things like sky diving, traveling, going to museums and aquariums, and photography.

    ME has taken all these things and more from me. I did not stop doing them because I am depressed. I <i>am</i> very sad that I can no longer do them. I did not stop doing them becasue I had "irrational illness beliefs" and mistakenly thought that doing very little would help. <i>On the contrary</i>, I tried to continue them as long as I possibly could, and that made me keep getting sicker. I only backed off when my body absolutely would not let me do them any more. I did not stop exercising as I used to because I was afraid of exercise. I <i>am</i> afraid, very afraid, that I will not be able to do those things again. Running, especially has brought me joy for 26 years. It kills me to think that I may never be able to run again. I miss running tremendously. I miss my life tremendously. I want that life back.
  5. AuntTammie

    AuntTammie New Member

    I see that you noticed the same ridiculous description that I did. (cramps, etc...ugh!) I commented about it elsewhere, although that thread was predominately about something else so you may have missed it.

    As to your comment, " Be very afraid of Peter White and his collaboration with Bill Reeves. In them you have the mother of all battles. Peter White and Wessely are very close. White is laying the groundwork before Wessely steps in in a big way. Please don't feel sorry for us in the UK, save your energies because these guys are coming and you're going to need all the help you can get." I absolutely agree, although I do feel bad for you in the Uk, too. I have seen this for quite some time, as have others here, and it is very scary.

    Honestly, though, in the guardian article that this thread is about, I can understand some of the comments by people who are struggling with mental illnesses. I am not happy about them, and I do not agree with them (which is partially why I felt compelled to respond), but I do understand them. They face a lot of stigma and they (ignorantly, but understandably) feel that our situation is bringing them more stigma and grief.
  6. quilp

    quilp New Member

    I agree with you and i understand their anger to a certain extent, but like you say this is borne out of ignorance. It's not the stigmatising i object to. If i am in need of a psychiatrist i would happily see one, even Wessely. In fact in 1995 if you were suspected of having CFS/ME the standard treatment was to go and see a psychiatrist. Indeed i had several sessions with a psychiatrist before he said there was nothing wrong with me !

    I believe we'd all do anything to get better. If i am suffering with mental health then fine, treat me as such, but what those struggling with mental health don't realise is that in objecting to the attachment of such a label to our own illness, we are not denigratring their own sufferings, merely fighting for appropriate treatment relevant to own biological dysfunctions.
    We haven't been able to get that message across because Wessely, White et al have a powerful PR machine behind them. They have hot lines to all media outlets, and Wessely himself is never off the radio, TV and national newspapers.

    Anyone who is ill has my utmost sympathy and my genuine concern. What has happened to us is one of the biggest medical scandals in the last fifty years.

    By the way i used to enjoy running too. The flow of endorphins, the sense of achievement and increased energy levels. Oh i miss those days. I am 40 years old next year and when i see others running, i wonder if they realise how lucky they are ( although seeing them struggle up a one in five hill might not be a good time to advise them of the fact...)

    Kind regards, Mark
  7. AuntTammie

    AuntTammie New Member

    " what those struggling with mental health don't realise is that in objecting to the attachment of such a label to our own illness, we are not denigratring their own sufferings, merely fighting for appropriate treatment relevant to own biological dysfunctions."

    Exactly!! You said very well in one sentence what it took me several to get across : )

    and, I so totally know what you mean about wanting to tell other runners how lucky they are.....I even think that when they are running hills, though - strange though it may be, I absolutely loved running hills
  8. quilp

    quilp New Member

    Me too, especially on the way down :))

    Going from running five miles easily to not being able to run a tap.

    Goodnight and take care all, Mark

  9. AuntTammie

    AuntTammie New Member

    Mark, it's so nice that you understand.....and so awful that you understand, too.....I hope and pray that somehow, some day we will both be running again
  10. Rafiki

    Rafiki New Member

    I was truly shocked. I have been off the computer for a couple of hours and haven't had the heart to go back and look. It was all so hideously mean spirited and childish and ridiculous and deeply frightening.

    I am afraid of Peter White.

    Thank God for Whittemore and Peterson and DeFreitas and Cheney and RichVank and everyone else who has stayed at the bench for the sake of all of us. Evidence is the only way out of this nightmare.

    Peace to you,
  11. Rafiki

    Rafiki New Member

    Brilliant! Absolutely brilliant! I am astonished that you could so quickly write such an effective, cogent and completely on point essay!

    I am impressed and grateful and more than a little relieved to know that this fine essay is now a part of that distressing conversation!

    Thank you very, very much!
  12. AuntTammie

    AuntTammie New Member

    Thank you for your compliments, and thank you for what you wrote in the comments section of the guardian, too......You also did a nice job and I very much appreciate it. : )

    Sometimes I feel like writing this kind of thing is a drop in the bucket, but then I think that every drop is still better than not bothering at all....and those drops do add up.
  13. Rafiki

    Rafiki New Member

    That was a fine, fine drop!

    You know, when you said you though it was too long and you weren't sure you should have gone into the whole depression, PTSD thing... I thought you were probably right and that shorter was probably better and we don't want to be easy to dismiss... then I read it. It was perfect.

    It was great that it was long because it was so well written. I think people would actually read it... all of it. And, it takes up a lot of space with rational, intelligent, thoughtful prose!

    Yay you!

  14. AuntTammie

    AuntTammie New Member

    Wow - more compliments! I really hope that people do read it, and that they react similarly to how you have (in that they get what I'm trying to say, and that it has an impact; not that they compliment me.....I didn't write it to get compliments, but I do have to say that yours have made my thanks again)

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