Resource Community Report: ME/CFS Patients on Advice For the NIH Clinical Center Study

[Cort]

Cort submitted a new resource:

Community Report: ME/CFS Patients on What Tests the NIH Clinical Center Study Shoud Do - ME/CFS community provides over a 100 suggestions to Dr. Nath

[fright]View attachment 1084 [/fright]The ME/CFS Community provided over a hundred suggestions to Dr. Nath regarding the large Clinical Center study to begin in the first half of 2016.

I delivered the suggestions and this message
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To Drs. Nath, Koroshetz and Vicky Whittemore

Thanks to the NIH, after its many years of ignoring this disease, for making such a...

Read more about this resource...

 

[serotone9]

Good list, unfortunately none of it matters. Walitt is invested in saying that any biological abnormalities really aren't abnormal at all, and that it's all psychogenic -- just a way of experiencing normal life events and experiences. They can study whatever they want, and it won't matter with Walitt at the helm.

 

[San Diego]

What a fabulous, comprehensive list. The drumbeat is getting louder each day as findings from across the globe come together. I hope we are getting pretty hard to ignore. Thanks for putting this together!

 

[Cort]

Good list, unfortunately none of it matters. Walitt is invested in saying that any biological abnormalities really aren't abnormal at all, and that it's all psychogenic -- just a way of experiencing normal life events and experiences. They can study whatever they want, and it won't matter with Walitt at the helm.

Walitt is basically an administrator...The only way he could ruin this study is by sabotaging the tests and the equipment used to run them. He's definitely not God's gift to ME/CFS and I wish he wasn't there but he's said he wants to find a physiological cause of these disorders....Hopefully they will replace him but if they don't I think we will still be fine.

Check out the blog tomorrow and I think you'll feel better about the study.

 

[Cort]

What a fabulous, comprehensive list. The drumbeat is getting louder each day as findings from across the globe come together. I hope we are getting pretty hard to ignore. Thanks for putting this together!

Dr. Nath replied almost immediately to my email...(Nice!)

He said "Thanks for your support and for providing the wish list. As you point out pursuing all these is not going to be feasible" that his expertise is on neuroimmunology and that's where their focus and "where we can make a significant contribution"..

We cover the study tomorrow with Simon's excellent piece.

 

[IrisRV]

They can study whatever they want, and it won't matter with Walitt at the helm.

I don't like Wallit being there, but it appears he isn't actually at the helm in any significant way. According to NIH he's in charge of clinical oversight and administrative hoo-hah. He will not be performing research or interpreting research.

Perhaps the worse he'll do is annoy participating patients during testing by discussing with them his psychosocial theories about the illness.

 

[Marcie Zinn]

I am always surprised (and I should not be so surprised) at the seeming inability of some people to grasp this horrible medical problem! I wonder what it takes to get the naysayers to just look at the evidence.

My own core training is Clinical Psychology, and I got my Ph.D. at a 'cognitive-behavioral" school, so I know the "somatization" viewpoint pretty well. CBT is all about uncovering the dysfunctional thinking that causes some somatic symptoms. The concept was never meant to explain full blown medical diseases, and it cannot do so.

Symptoms of somatization pale in comparison to the symptoms ME/CFS patients live with. What is being overlooked is how it is that beliefs create biological consequences--what is the mechanism(s)? How can negative thinking (for example) leave someone so exhausted as to not be able to get out of bed?

One example (in the 80's and before) is the well-known "fact" that stress causes stomach ulcers. Then along came the stomach bacterial cause which nixed the idea that stress causes ulcers. Now we know it is a combination of the two--both are usually present when a person presents with stomach ulcers.

In contrast, CFS/ME is so extremely debilitating that I challenge anyone to show how it is that beliefs somehow get magically transduced into the horrible symptoms CFS/ME patients have--PEM, cognitive impairment, insomnia, pain--the works.

Thanks to the careful, inspired and brilliant research that so many have contributed, we now have a multitude of positive physical findings which go a very long way to explain the symptoms. '

Therefore, anyone who says that CFS/ME is just somatization disorder has to demonstrate experimentally how it is that these beliefs, attitudes, etc. become this disease. It is not enough to diagnose by exclusion. They must show how it all works.

 

[Simon]

Symptoms of somatization pale in comparison to the symptoms ME/CFS patients live with. What is being overlooked is how it is that beliefs create biological consequences--what is the mechanism(s)? How can negative thinking (for example) leave someone so exhausted as to not be able to get out of bed?

anyone who says that CFS/ME is just somatization disorder has to demonstrate experimentally how it is that these beliefs, attitudes, etc. become this disease. It is not enough to diagnose by exclusion. They must show how it all works.

Hi Marcie

Thanks for such an incisive post. I thank that nails it: how can symptom focusing etc explain an illness that confines people to bed, or makes them too ill to work, socialise, continue a relationship - huge, negative, life-changing stuff? It makes no sense, yet this goes unchallenged.

The idea that deconditionning explains it too is debunked by similar fitness levels (VO2 max) between patients attending outpatient clinics and sedentary controls. And bed rest studies show that even healthy volunteers deconditioned to extreme by months of bedrest are nothing like as tired as mecfs patients, and recover their function afterwards without suffering from PEM or other significant problems.

 

[Simon]

"

• Replicate the Japanese Neuroinflammation Study – and talk to the Japanese researchers. The Japanese used a PET scan ( PK-11195 marker) to find widespread neuroinflammation in ME/CFS patients brains. They have upgraded their approach and undoubtedly have things they’d like to share. A major exploratory without an attempt to find neuroinflammation would be a missed opportunity."

That's bang on. If you are investingating a hypothesis that immune problems leads to brain dysfunction, this is the money experiment as it looks at microglia: at least three other researchers have independently suggested chronic microglial activation is behind the illness, as well as much wider evidence implicating them in several brain disorders. The NIH might not have the necessaar kit, though.

ps where's the quote button?

 

[Cort]

"

• Replicate the Japanese Neuroinflammation Study – and talk to the Japanese researchers. The Japanese used a PET scan ( PK-11195 marker) to find widespread neuroinflammation in ME/CFS patients brains. They have upgraded their approach and undoubtedly have things they’d like to share. A major exploratory without an attempt to find neuroinflammation would be a missed opportunity."

That's bang on. If you are investingating a hypothesis that immune problems leads to brain dysfunction, this is the money experiment as it looks at microglia: at least three other researchers have independently suggested chronic microglial activation is behind the illness, as well as much wider evidence implicating them in several brain disorders. The NIH might not have the necessaar kit, though.

ps where's the quote button?

That is the money experiment. If the NIH doesn't have the kit now I imagine they'll need to get it to keep up. Now would be a good time.
It's next to the smiley button - 6th from the end of the last row...