SIMON WESSELY - Please read

Discussion in 'Fibromyalgia Main Forum' started by quilp, Mar 13, 2009.

  1. quilp

    quilp New Member

    Please read his interview about CFS on New Scientist dot com. This is what we have to deal with here in the UK. I would like to say more, but quite frankly, I would be banned from this board if I were to say what I really think about this man.

  2. AuntTammie

    AuntTammie New Member

    Interesting that when I got sick I was running 26.2 mile marathons, swimming, biking, etc. and having a very busy life. I looked into every possible explanation for what I had and the only one that fit is CFS. I do still exercise, but am unable to do anywhere near what I used to do because of post exertional malaise (a physical condition which has been proven to be caused by the mitochnodria failing to work the way they are supposed to, not by how I think!).

    I initially tried to keep up the same level of activity I had pursued before, having done so in the past when I had other illnesses and minor injuries. I have never been one to fixate on illness, or to let it stop me from running, because running is one of my absolute favorite things and I have been a runner for 26 years.

    I was hardly "trapped in vicious circles of monitoring [my] symptoms, restricting [my] activities beyond what is necessary" as Simon Wessely wants to say. I was mostly dismissing the symptoms and trying to keep living my life. Unfortunately, as is the case with most people with ME/CFS (not just normal fatigue) that made me get much worse. No amount of wanting to keep going and willing myself to keep going (as I was able to do previously) worked.

    I should note here, too, that I am trained as a counselor, so I am very aware of the benefits of CBT for various issues, as well as aware of the connection between mind and body. I would embrace that if it were a way to be cured, but that's not the case. A look through the research confirms that I am right. There are studies proving that CBT and Graded Exercise Therapy have proven unhelpful to most people with CFS and to actually cause harm to many.

    While I would never send hate mail, I am completely unsurprised that Simon Wessely is getting it when he continues to push a "cure" that does more harm than good.

    btw, Mark, I totally understand what you mean about being banned if you posted what you want to say.....I am so fed up with people like him, not only pushing harmful "treatments" on us and saying that it is in our heads, but also hindering real research when people buy into his cr*p theories.....the stuff about hate mail when he is "only trying to help us" is just golden!!! That brings to mind the saying, "with friends like these, who needs enemies?" I wish he would stop "helping", and if he truly thinks that is help, then maybe he needs to get his own head examined!
  3. quilp

    quilp New Member

    AuntTammie, I have never seen such an outpouring of anger on the New Scientist website. I have just read your posting along with many others. I think there's over 160 posts there now. The genesis of his thinking, is that we have conditioned ourselves into being unwell through inactivity, and that we have become a slave to our symptoms. Just reading those comments, the gravity, the intensity, the anger, makes my blood boil. I like many others tried to push myself through the pain barrier because I had a life to lead. In fact I had so much to lose; why would I restrict myself ?

    In fact it is now not in dispute; those that tried to push themselves during the early years of this illness have gone on to suffer much more later. It's not just the poor science on his part, it's not even the fact that he's contradicting himself; what really annoys me is that he has so much power and influence.

    He complains about 'hatemail' I am truly surprised that that is all he's had to complain about. There is seething mass of anger that is just waiting to erupt.

    Kind regards Mark
  4. AuntTammie

    AuntTammie New Member

    You are so rt about his level of influence.....if it weren't for that I couldn't care less what he thinks, but the fact that he is in a position that impacts so many in such a bad way absolutely infuriates me.

    I was trying to talk redirect my thinking about this article ( a little CBT used for a more appropriate reason!) I decided to try to see his viewpoint in a more humorous manner, and what I thought was.....Hmmm, I never realized that training for and running 26.2 miles at a time constitutes inactivity?! I guess my graded exercise prescription when I first got sick would have been a 50 mile ultra! (Ok, so that isn't a good exp of CBT, but then it's hard to use it for so utterly ridiculous a premise).
  5. jasminetee

    jasminetee Member

    Wessely is a total idiot!

  6. nixon

    nixon New Member

    and it's a REAL SHAME that we have drs. putting this type of information out there. I'd say yes, people can cause themselves more stress symptoms........but NOT when dealing with a person who is ACTUALLY been dx with CFS/ME/FMS. I'm sure there are some people who "claim" to have chronic fatigue......that really do not, they may be lazy, or drug seekers. As for anyone who is truly affected by these illnesses........KNOWS BETTER!! It is NOT all in our heads. I agree with everything that AuntTammie in the beginning of my illness, my mother suggested I try getting a part time job....(thinking maybe that would help)- HA little did she/or my hubby know. I took the Home Health Care job, out there caring for disabled people in January 'o6, by May'o6 they basically fired me because I had become unreliable. I was ACTUALLY sicker than some of the folks I was caring for!! It started part time, slowly they pushed me into full time(40+ hrs. a week) I'd come home SO EXHAUSTED , that I would just go to bed.....hubby had to cook dinner, and if he could wake me up- I'd eat. My weekends were spent in bed. After that I've continually worsened, and I know "Thinking it Away" would not work!! Geeze- just imagine if it would........and I'd also like to state- I was NEVER a depressed or Anxious lady, but since contending with these illnesses and TRYING to get the proper medical attention- I have become a bit depressed and anxious at times. Andrea
  7. illroy

    illroy Member

    It's good to see 183 responses to the article so far. The other articles have only 5 or 10.

  8. AuntTammie

    AuntTammie New Member

    It sounds like your family understands a little more they? I hope so. It's too bad that you had to go through all that, though.
  9. AuntTammie

    AuntTammie New Member

    You're rt, Roy; that is great! I wonder if people are actually reading them. I started to, and then saved the article so that I could read more later. The ones that I read were pretty good.
  10. simonedb

    simonedb Member

    I can relate, I too was a runner and lived for it, I still 20 years later, crave and miss it. before whatever happened to me happened I couldnt imagine anything could come along that I couldnt fix with the right exercise.
    I feel though, that in the u.s. culture of medicine that I developed a bit of a complex of self doubt because of all this over the years, knowing deep down my self, that if there was any way in hell I could run and dance etc I would do it, but then wondering geez could the doubters be right, is there something I am overlooking? and then replaying all the events leading upto it wishing I could have just gone down a different path, done a couple things differntly, maybe I wouldnt be in this boat.

    anyway, i am not going to go read it, don't want to get mad.
  11. AuntTammie

    AuntTammie New Member

    I know what you mean about doubting this. I definitely did that, too, but the running part was what really proved it to me, more than anything....I mean there were other things that also helped prove it, but the impact it had on my running did so more than anything. I had run through everything imaginable before, I was in marathon shape, but at the same time was not overtrianing, and I absolutely loved to run and wanted to run I couldn't blame it on being out of shape, couldn't blame it on lack of motivation, depression, or lack of desire to run more again, and though I didn't think it was due to too much training, the fact that rest did not help, confirmed that. I simply could not make my body work right anymore, no matter how much I wanted to , and no matter how much it was killing me not to.
  12. sunscaper

    sunscaper New Member

    I was not a runner, but I put myself through alot of exercise to see if that was the problem, but it did nothing but make my CFS/ME worse. Now the little exercise that I try to do everyday is almost impossible..I have such breathing problems that nothing seems to help...have to be on oxygen 24 hours/day, and really question if it really seems to make things worse...then there is Cheney's Oxygen Toxicity Theory..can someone explain that to me? My brain fog is very severe, now.

    I was a psychotherapist, does little good, anymore..except to help me cope with this disease, according to my brother..CBT would only help for coping mechanisms for these diseases..'really wish I had a Medical Degree, at this point.

    Early in my disease, in my thirties, I put myself into therapy, to make sure that there was nothing that needed psychotherapy..I was pronouced to be free of any such problems.

    I have, now, had CFS/ME for over thirty + years, and think that it is way beyond time for the Medical profession and some Psychologists/Psychiatrists to get over their obsession with Psychology as the basis for this disease...can they not listen to Anthony Komaroff?

    Wessley is a weasel... and is doing extreme damage to the people in the UK..and maybe, to the rest of the world, if he is not stopped.

    my 2 cents...

  13. Rafiki

    Rafiki New Member

    has his whole career on the line now. He will never give it up. This is all he has. He doesn't have the strength of character to say he's wrong even when his own numbers point to that conclusion. It is more than money for him now - although I'm sure that has been a big motivator as the darling of the ins. set - now it is his professional reputation. He would have to be a much bigger man in order to see through this massive self interest.

    He will be brought down; it's inevitable. I think that this New Scientist thing will blow up in his face. The writer may have been clueless but the mag. has been criticized in terms that are meaningful to its credibility. There are many calls for equal time for actual science, for better science, for science from published journals.

    I may have my rose coloured glasses on but I'm not altogether sure that this was a bad thing.

    Peace out,

    ETA Oh yeah, one of the comments cited a New Scientist article from a few years ago the title of which I cannot remember but which meant that CFS was now understood to not be psychological and the magazine was charged to update its original assertion.

    The ice under Wessely feet is getting thinner and thinner.

    Can you hear it... c r a c k i n g

    [This Message was Edited on 03/14/2009]
  14. sunscaper

    sunscaper New Member

    A doctor had an attitude adjustment in our area, after being diagnosed with these diseases...his story was in the local newspaper and he admitted that, in the past, he had summarily dismissed people with CFS/Me.. but now, he indicated he would rather had contracted Parkinson's Disease or any other treatable disorder than this horrible disease..He had lost his family, his ability to practice medicine, and of course, as we all know, was a target for the general negative dismissal of the general public.
  15. AuntTammie

    AuntTammie New Member

    I would love to read that story, but although I am glad that it might get a few more people to understand (hopefully inc a few more Drs), I hate to hear of anyone else getting stuck with this evil illness.....I love to think of temporarily giving it to a bunch of people, but I don't wish it on anyone for good.
  16. waltz

    waltz New Member

    Is the story of the doctor who had an attitude adjustment online?
  17. sunscaper

    sunscaper New Member

    Aunt Tammie,

    I just wish that these doctors, who claim to know so much, could experience this disease for at least one day, to know what we are dealing with....


    I don't know if it is on the has been a good while..I am dealing with breathing problems and a partially collapsed lung, right now..if I can find it, I will let you know..
  18. outofstep

    outofstep Member

    Thanks for alerting us re: this article. Wessely needs more abuse so I hope that others will leave comments on the New Scientist website-they censor though so you'll need to think of polite ways to say that Wessely is a @#!%& quack.
  19. waltz

    waltz New Member

    Oh, don't worry about it. I hope you recover from that soon!
  20. skeptik2

    skeptik2 Member

    I was thinking about how the UK and the US are such close partners in just about everything; the Iraq war, the economy, and now CFS.

    The US is not as "close" to Canada, plitically, and they are the ones who have furthered our cause with their Canadian Criteria for CFS/ME.

    So, I conclude that the US is trying to bind itself to the UK's CFS line of thought, for all the obvious financial reasons. Both Wesselly and Reeves are looking to their future. I hope they don't have one, as un-nice as that sounds. They don't deserve it, same as the AGI guys don't deserve their big fat bonus money.

    Sickening, the way science and finance has been skewed these past 25 years.