NIH Stumbles: Asks ME/CFS Denier to Speak on Chronic Fatigue Syndrome

Discussion in 'ME/CFS and FM News' started by Cort, Nov 4, 2016.

  1. tuha

    tuha New Member

    I am disappointed from Koroshetz response to Jenifer Spotila letter. If they realise the mistake to invite that guy they should immediately cancel his invitation. But Koroshetz response between the linces is "well we should count with all the possibilities". we have still long way to go. I read this situation that on NIH there is still a strong group of people who simply dont believe that ME is biological disease. It would be really easy for Koroshetz to cancel the invitation of that ME denialist but for a reason he doesnt want - but this is not the way how to make a trustfull connection to ME community. I hope Ron Davis will find out who invited him - if Wallit - he should immediately leave all work connected to ME.

    Still really angry and disappointed - shame on psychiatrists community. The way how this area works is ridiculous and even dangerous.
    jeanie pochatko, PamJ and Gamboa like this.
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Right! How in the world can the NIH implicitly condone this kind of attitude?

    The lecture, by the way, is in two days. The Solve ME/CFS Initiative just reported that it is due to go on.

    I do want to note that it was Maureen Hanson, ME/CFS researcher, who noticed what was happening and alerted the community in a tweet.
  3. fef

    fef New Member

    Cort, you describe this execrable man as a psychiatrist, but as far as I can see he has no medical qualifications at all. He is a historian. How he has amassed so much power and apparent kudos is beyond me and extremely worrying. It isn't only ME/CFS he has such disdain for, he seems to specialise in creating controversy.
    Katie, jeanie pochatko and Adelle like this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I agree. You can't explain the funding problem because someone thinks ME/CFS is a mental illness. Mental illnesses get plenty of funding.

    There's something else going on and it's somewhere, I think, around the idea that they don't know what ME/CFS so they've decided that it's nothing or it's just malingering or whining or whatever. (If only they knew how hard people with ME/CFS have tried to have normal lives. Or how absolutely wrenching it is to lose your job or your career).

    It reminds me of the researcher Queen Mary of London University brought up to defend them in the PACE data trial. The judges were so incredulous at his over the top, inflammatory behavior that they actually chastised him in their decision.

    They talk about aggressive patients, but some researchers just get tweaked. Look at the editor of the Lancet. If he normally behaved the way he does with ME/CFS he never would have gotten to the Lancet. He's gone a little nuts.

    This guy is on a different level entirely though. I can't remember any medical professional acting in such an ugly manner. He's crossed a line and the NIH should take account. Don't invite people who belittle the people you're studying. I mean c'mon! Why would you ever allow that?

    You certainly can't expect the ME/CFS community to just roll over and say that's OK.

    This is not the ME/CFS Community saying though, that you can't hear from someone who uses behavioral techniques to help with chronic illnesses. It's not the ME/CFS community "acting out". It's making a reasonable request; it's making a request that any disease community would make.

    You can't bring in people who belittle people with a disease.

    On that factor alone Koroshetz should be able to go to his peers and say this guy isn't appropriate, and they should be able to understand that.
    Last edited: Nov 4, 2016
  5. Karena

    Karena Member

    For some reason, we seem to make tempting targets for people like this. They make a career out of our misery. And too many doctors are still receptive to their message.

    Given all the studies and evidence, I don't know why people still doubt us. A good doctor (or friend, or family member) should be able to tell if we're lying about or exaggerating our symptoms. Their inability to do so reflects badly on them, not us.
    Lissa and jeanie pochatko like this.
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

  7. Seven

    Seven Well-Known Member

    :wacky: Is in the blood, is in the blood. A bottle unattended here, an accidental prick there.... this is a joke by the way! I have a dark sense of humor sorry. Too late tonight
    jeanie pochatko likes this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I agree. We really need to know how and why this decision was made. I wouldn't be surprised, to tell you the truth if Koroshetz and Vicky Whittemore had no idea this was coming down the pike. The Intramural program seems to be doing their thing and Vicky is doing hers. She would never condone this.

    I don't see how this doesn't come out of the Intramural program, and if it didn't, it would sure be helpful to know that for their sake and ours. I hope they don't just clam up.

    Advocates have been asking for input in part to help the NIH avoid shooting itself in the foot as it just did.
    PamJ likes this.
  9. Seven

    Seven Well-Known Member

    In a more serious note, and the throw a pint of blood to the face image aside, I like the idea of a formal senate Request or however you get a real investigation going. Just to send the message that we had enough and we are serious about been taken serious and we will use all the channels and noise so they think twice before a mistake like this is done again.
    jeanie pochatko likes this.
  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The SMCI has acted quickly. I think they probably have more pull with the feds than any other organization. (This is not to say that they have a lot but they are problem at least listened to.) They reported:

    but that
    It appears that the call to disinvite Shorter is being backed by some "ME/CFS specialists at the NIH".

    See their entire report here
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  11. Hello!

    Hello! Well-Known Member

    Perhaps he'd like a blood transfusion from one of us.
  12. Tina

    Tina Well-Known Member

    I am to participate in the Focus Group portion of the Intramural Study. I feel like pulling out. I know it is a small gesture to call and say that I do not wish to participate. And I am sure they could easily fill my slot.

    I am very tired and very torn.
    Katie, jeanie pochatko and PamJ like this.
  13. weyland

    weyland Well-Known Member

    Ed Shorter is very far from a medical professional; he's a PhD, not an MD.
  14. ShyestofFlies

    ShyestofFlies Well-Known Member

    Grumpy Ed, Pretentious human-hemorrhoid Disease :hilarious:
    Katie likes this.
  15. Martha Lauren

    Martha Lauren New Member

    Here would be my one point of hope...

    Trying to imagine this situation from the viewpoint of the NIH, I see an organization that - to our collective dismay - has been paying tragically too little attention to this disease since its beginnings. Now they are finally (hopefully) beginning to. But because they think of themselves (and are) first and foremost scientists on a scientific mission to understand the condition, they must consider it from all angles. (This appears to be the primary point of Koroshetz's response to the CFS/ME community.)

    And unlike all of us here, they have just started to pay attention, to educate themselves on the subject, and so, are just now starting at the very beginning. So we have to wait......for them to catch up.

    As we all know, at least one encounter (often many more) with the psychological model of CFS/ME is inevitable when looking into the origins and cause of this disease. It is undeniably a part of the collective set of theories floating around, weather we like it or not.

    The good thing about their having invited someone with such an obviously biased and extreme position to represent the history of the disease, though, is that it may serve as the most powerful evidence we could ever hope for, of how strongly bias, doubt and downright dislike and disrespect of patients has shaped that history (and in turn the current, terribly under-funded state of affairs).

    Maybe the extremity of his perspective will be just exactly what is needed to highlight the stranglehold that such simplistic and archaic thinking has put around the evolution of thought, research and funding.

    Perhaps I am being too optimistic, but if his speech is anything as honest as his writing, just think of how far his presentation will stick out compared to the rest of the listed lineup. If his style were more subtle and less clear (like Wailitt's ramblings) I'd weirdly be more worried. It's hard to imagine that he won't stick out like an extremely sore thumb.
    Adelle and Angel27 like this.
  16. PamJ

    PamJ Active Member

    Koroshetz' excuse for inviting this "psychiatic historian" is that the NIH has to take into account different opinions on CFS/ME. But this loser is not even a physician, has done NO research, and is not even saying that CFS is a mental illness like depression. Based on nothing at all, he believes that CFS/ME equals malingering. I'm pretty sure that the NIH can eliminate the "malingering hypothesis " without listening to this guy's speech. If they can't, we are in trouble.
    rosa, Adelle, Katie and 2 others like this.
  17. PamJ

    PamJ Active Member

    Strongly agree. When Koroshetz says the NIH must consider different possibilities, he is really saying they are going to consider this speaker's bizarre, unresearched opinion that there is absolutely nothing physically or psychologically wrong with people diagnosed with CFS/ME. This is unacceptable.
    rosa, Adelle and Karena like this.
  18. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I hope you're right. I think you are actually. The NIH has heard from the likes of Dr. Komaroff, Peterson, Staci Stevens, Mark Van Ness and Lenny Jason. Mark Van Ness said their exercise work got a good reception including from Brian Walitt. Most exercise physiologists are shocked by Workwell's and others findings. And now comes this guy saying its all nonsense. He's going to stick out like a sore thumb.

    Nice point!;)
    Adelle, jeanie pochatko and Angel27 like this.
  19. Yes, but so many of them think they are a Go-given gift of extreme intelligence to the world, and all many of them have done is just go to school for a long time, which many of us who have CFS were denied as we were too sick to keep going to college!
    Adelle, Katie and Karena like this.
  20. waiting

    waiting Member

    If Vicky Whittemore cannot get the invitation rescinded (although with the ME advocacy community's instant protest, maybe it will happen), I wonder if there could be a compromise (which no, I believe should not be necessary).

    In recognition of the massive divide between the (mistaken but historically prevalent) BPS view & the (scientific evidence based) pathophysiological view, the NIH can set up more of a debate than a standalone talk by Shorter.

    For example, a good invitee for this purpose would be Dr. Komaroff.
    Karena likes this.