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

[tuha]

After my anger died down I feel sorry for Vicky Whittemore actually. She's worked so hard to earn the ME/CFS communities trust and then some idiot or, at the very least, some totally clueless individual comes along and sabotages that.

Shorter does not in any way reflect what I see the NIH doing but there's someone at the NIH who agrees with him or feels that he should be heard, and as Ron Davis said, we should know who that is and what they were thinking when they invited him.

I like what Waiting said when we learned about the Canadian grant review (see the Dark North post). The tone was very similar; the reviewer said this is not a real disease - you're wasting your money studying it, etc. I imagine that it even could have been Shorter since he is a Canadian.

Now that this person is out in the open it gives us a chance to ferret people like that out; it actually gives us a chance to move forward.

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.

 

[Cort]

This is really what I don't get. How can this kind of animosity and hatred towards patients be tolerated, even if they are psychiatric patients?

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.

 

[fef]

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.

 

[Cort]

So I don't have an answer for this myself, but something ALWAYS strikes me as interesting when these - 9/10 psychiatric or psychology type nay-sayers voice their opinion.

While I know 100% for certain that ME/CFS is not depression, if I were to "play along" with these people and say it were...

There's still a problem and it's this: if you ask most providers in mental health they will not tell you that people with depression are malingerers not deserving of disability benefits if they are sick and not improving. Most will support truly ill patients in seeking benefits if they need them on a mental health diagnosis alone.

Which is telling and fascinating- as you will almost always hear that [we don't deserve any benefits and just need therapy] from the "ME/CFS is just depression/psychiatric disturbance" crowd.

_______

So it strikes me that they are among the camp that is anti-welfare, and anti-recovery, anti-patient.

Wholly, 100%. This is about control. It's politically conservative (in the bad way) and I would be willing to bet these people are among those who believe no disabled people should be receiving benefits of any kind unless they are "100%" visibly disabled.

It is very interesting: these same people do not push for "biomarkers" in their own categories of illness-

Depression likely is biological for many many people, and yet they (this group of providers) don't push for biological explanations because their entire business profits off of diagnosis by symptoms- no tests confirm depression to those they hand out diagnoses to.

If you are so sure [ME/CFS = depression] - push to find a biomarker for depression. Then push to prove that people with ME/CFS have that biomarker.

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.

 

[Karena]

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.

 

[Cort]

Exactly: this would be a breach of ethical practice and considered abuse of power towards psychiatric patients alone. Just because psych patients have "mental health" issues doesn't mean it's not a real medical problem or a brain and chemical disorder- not just behavioral silliness.

People who think that way are stuck in the dark ages and often feel mentally ill people are to blame for their own symptoms and illness. Hmm sounds familiar...

Amen!

 

[Seven]

This is disgusting! I feel like we're back in 1986! I wish this guy would get CFS!

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

 

[Cort]

I am not as upset at the goofball or lingering Strauss-follower invited the angry dinosaur. What I'm most upset about is that this was not mentioned in the "we want to be transparent / we want to keep you informed" phone call just the day before. Did no one on that call know he was coming? If so, how can we trust the calls are really telling all NIH is doing on the disease? And if people or a person on the call knew and didn't tell, then they are hiding stuff while pretending to be transparent.

This part of it has broken trust. And, in my view, trust can only be restored if there is an explanation of who made the decision, explanation of why it wasn't mentioned in the call, and if there was purposeful hiding, whoever is responsible for deciding to hide it from patients be removed from all future ME/CFS stuff at the NIH.

Only when this information is released and the appropriate action taken can trust be restored.

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.

 

[Seven]

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.

 

[Cort]

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:

A professor of psychiatry and history at the University of Toronto, Shorter is an outspoken skeptic about the biological nature of ME/CFS. He has referred to the disease as both a “psychodrama” and a “psychic epidemic” and called the findings of the Institute of Medicine’s report on ME/CFS last year “junk science.”

Shorter’s stance and use of degrading language toward patients (such as labeling them “moaning and groaning victims”) has caused his opinion pieces to be removed from public forums.

SMCI President Carol Head has reached out directly to NIH officials to strenuously object and seek removal of this speaker who presents a theory that has no scientific validity and is deeply damaging to ME/CFS patients.

but that

As of the afternoon of November 4, Shorter is still scheduled to speak—despite the recommendation from ME/CFS specialists at the NIH that he be disinvited. The NIH has not yet returned our calls to clarify the situation. SMCI will continue to monitor the situation closely and expresses the following:

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

See their entire report here

 

[Hello!]

I do TOO!!! hahaha

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

 

[Tina]

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.

 

[weyland]

But why such cruel language? I have no idea. I've never seen anything like it from a medical professional in print.

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

 

[ShyestofFlies]

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

Grumpy Ed, Pretentious human-hemorrhoid Disease

 

[Martha Lauren]

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.

 

[PamJ]

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.

 

[PamJ]

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.

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.

 

[Cort]

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.

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!

 

[jeanie pochatko]

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

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!

 

[waiting]

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.