NIH phonecall and Q&A, Tues 8 March

[valentinelynx]

Clearly Brian Walitt has not changed his mind on fibromyalgia because he has just co-authored this psychosomatic interpretation of it:
https://www.arthritis-research.org/... of fibromyalgia - NRR submission version.pdf

Thanks for posting this paper by Walitt and Wolfe (published in 2013, see link below). Here is a key quote from the concluding paragraph:

"Fibromyalgia seems to be a somatic symptom disorder with remarkable similarities to neurasthenia. It represents the end position on a continuum of distress. While psychological issues are clear, powerful societal forces are marshaled on behalf of fibromyalgia, and it seems likely that they will sustain the fibromyalgia, at least for the present. Studies of neurobiologic mechanisms need to consider the dimensional nature of the disorder and its variability."

The authors (Walitt and Wolfe) take the position that fibromyalgia is a "contested" disorder, that it is a somatoform disorder that is part of a continuum of such disorders. That recent events in patient advocacy and drug marketing (and I do agree that the usefulness of the drugs marketed for fibromyalgia has been greatly overstated) have served to support the "reality" of fibromyalgia. Quote from the paper: "The message concerning “overactive nerves” reinforced the “real disease” message."

The last sentence in the paper appears to be a warning to researchers studying the pathophysiology of fibromyalgia that they may be being duped into studying a "false" illness that is really a societal construct that represents the extreme of a "a continuum of polysymptomatic distress." To translate, in my opinion - that FMS is a syndrome where the sufferers overinterpret normal somatic symptoms of distress as pathological. Echoes of Wormser's "aches and pains of daily life" (from the Lyme literature).

The final article was published in 2013:

Nat Rev Rheumatol. 2013 Dec;9(12):751-5. doi: 10.1038/nrrheum.2013.96. Epub 2013 Jul 2.
Culture, science and the changing nature of fibromyalgia.
Wolfe F1, Walitt B.

 

[valentinelynx]

The opinions Walitt expresses about FMS and ME/CFS, and the way he engages in vigorous hand-waving to obscure his apparent true beliefs gives me the heebie-jeebies. Big time.

 

[Groggy Doggy]

From a high level perspective, the study looks impressive. There are some areas that could use some improvement. I prefer to 'disagree and comitt' so we can move forward. I think we can gain a lot of useful information about our illness. Also, it would be helpful if we could get a few PR folks into the study. Fingers crossed, I would like to be a study participant and plan to ask my doctor if he is involved in the screening process.

My brother was a volunteer patient at NIH, in the past. I think would be an interesting learning opportunity.

 

[Simon]

How about a "We appreciate what you are doing" card to the NIH?

Just been reading the debate here and there seems to be consensus that while most people still have some concerns over the study (I do) we think it's a A Good Thing, potentially the start of somethingn really valuabe from the NIH, and we don't want people at the NIH to get the wrong impression of the patient community from isolated but unpleasant personal attacks.

It's NOT a thank you card - they haven't delivered anything yet - and would make clear we believe it's important to continue to listen to and respond to patient concerns, but would be a sign of encouragement from the community. They may not fully realise how much support theree is, because even those that support what they are doing are voicing concerns too.

We could even say criticisms are definitely not personal (though we may have concerns over personnel).

What do people think?

This would only work if a good number of people backed it.

 

[duncan]

How about: "We appreciate what you are doing, but please be so kind as to not hijack or derail the effort by peppering it with individuals with sketchy ME/CFS opinions, please make sure you listen to patients who, after all, are probably the most informed group concerning ME/CFS, please make sure you begin the study process by recruiting patients that actually have ME/CFS - and to that end it would be wise to integrate into the study process a patient committee with overseer function - and there is more, but this will have to do for now as we've run out of room on the card."

I certainly could back something along those lines.

 

[TiredSam]

How about a "We appreciate what you are doing" card to the NIH?

Could it be made clear that Walitt isn't included in our expression of appreciation?

I can see why it could be a good idea in principle and I'd sign it. One possible problem is that it would only take a few individuals who couldn't resist adding a critical/warning comment to their signature to rather sour the message.

 

[TiredSam]

Perhaps something more along the lines of a petition where people could just choose whether they agree with the expression of appreciation and sign it or not, rather than a card where people could add their own messages and bugger it up. If the number who signed the petition was embarrassingly low there's no need to send it, if it was high, it could be delivered. Although I expect some would be worried that it may lead to complacency about our outstanding issues at the NIH if they'd just received a big pat on the back. It could get quite complex and divisive among "the community", and the last thing we need is something else to bicker about.

Just my random thoughts.

 

[Simon]

Thanks, TiredSam

Could it be made clear that Walitt isn't included in our expression of appreciation?

Perhaps we could be clear who it is aimed at eg Collins, Koroshetz, Nath & Whittemore.

Although I expect some would be worried that it may lead to complacency about our outstanding issues at the NIH if they'd just received a big pat on the back.

Linked to the above, I think we need to be clear we are expressing overall appreciation for the efforts, esp that to ramp up overall investment in mecfs (inc RFAs). While stresssing need to listen to patient concerns (also give them some credit for reaching out to patients - don't think any research group has ever done anythign like this before).

Wording would be key, but we definitely don't want to encourage complacency.

The idea was to day thanks, we appreciate you are making an effort but it's important to continue to listen to patient concerns. To convey broad support for the NIH efforts, as opposed to a ringing endorsement, so they get to hear that message amidst the legitimate criticisms.

Perhaps something more along the lines of a petition where people could just choose whether they agree with the expression of appreciation and sign it or not, rather than a card where people could add their own messages and bugger it up

That's probably a smart idea.

 

[TiredSam]

Perhaps even a poll on PR first, to guage whether it's going to be divisive or not? ie whether the people who don't sign and those who do are going to accept and respect each other's decisions, or whether we're all going to start kicking off about it. I would sign just to spread a bit of goodwill.

 

[Simon]

I would sign just to spread a bit of goodwill.

That's it, in a nutshell: spreading a bit of goodwill.

 

[TiredSam]

Just thought of another consideration - we would want at least 725 people to sign it, otherwise it'll be less than the number of people who signed the petition to cancel the study, and that fact alone could send a rather depressing message.

 

[BurnA]

Just thought of another consideration - we would want at least 725 people to sign it, otherwise it'll be less than the number of people who signed the petition to cancel the study, and that fact alone could send a rather depressing message.

I'm sure if you call it a petition you'll get plenty of signatures

 

[Comet]

How about a "We appreciate what you are doing" card to the NIH?

I wouldn't mind something along the lines of: "Thank you for your efforts to find the biological cause(s) of ME/CFS and to begin to end the suffering of millions of patients with the new landmark study by the NIH. We patients and patient reps look forward to continuing to work together to find biomarkers, cause and treatment for this disease so that the unhelpful, and often harmful, psychosomatic diagnosis of this disease can be dismissed, and real treatment of can begin. The new NIH study brings hope to so many victims of ME/CFS. Please don't screw it up."

Ok, maybe we can change the last line.

Just throwing out some general ideas. I guess the point I was wanting to make is that I think it would be great to say Thank You as long as there are a few key phrases included, such as working together, dismissing psychosomatic diagnosis, suffering of millions, etc.

 

[Bob]

How about a "We appreciate what you are doing" card to the NIH?

As others have said, it would have to be carefully worded so it wasn't divisive or exclusive. The last time we ran a thank-you card for a divisive issue, a "no-thank-you" card was started in competition, which included some very negative and cutting comments. I thought the episode was embarrassing for our community, so I wouldn't want to see a re-run of that. I'm not convinced that it's the right time for it, while feelings are still running high. As @TiredSam suggested, perhaps it would be wise to ask the wider forum before-hand to gauge opinion.

 

[Simon]

I'm not convinced that it's the right time for it, while feelings are still running high.

Thanks, Bob. Actually, I think now is the time precisely something is needed, because feelings are running high and people in the NIH who are putting themselves out for us (I don't think there are any prizes for backing our unpopular, derided illness) are mainly getting flak for their errors and no credit for their good moves. But also, I think you are right, and it's not practical.

 

[BurnA]

I'm not convinced that it's the right time for it,

Maybe it's a bit soon. Perhaps once the study has started or when we've seen some additional funding come our way ?

 

[Groggy Doggy]

Thanks, Bob. Actually, I think now is the time precisely something is needed, because feelings are running high and people in the NIH who are putting themselves out for us (I don't think there are any prizes for backing our unpopular, derided illness) are mainly getting flak for their errors and no credit for their good moves. But also, I think you are right, and it's not practical.

I think we need to encourage NIH to "go the extra mile" for us. The study has the potential to prove our illness is biological (beyond a shadow of a doubt) and we could use the data points to sway our family, freinds, and doctors. It's critical to spur funding for future studies. I think its important to acknowledge what they have done so far and continue to offer our constructive feedback. We need to be reasonable and approachable during the study design process, because they need our help (we are the experts).

 

[viggster]

Good news: NIH scientist Jay Chung will be using the Solve ME/CfS biobank to look for metabolic problems. Chung is on the intramural team for the inpatient study as well. This is the first concrete collaboration between NIH and the community in this new era - the first of many, I hope.

http://solvecfs.org/Solve ME/CFS Initiative Provides BioBank Samples to NIH Researcher

A note on Zaher Nahle, Solve's rresearch director, who facilitated this collaboration: I met him last fall and was impressed by his enthusiasm and knowledge. He said he turned down better-paying jobs to work on ME. Ya gotta love that.

 

[A.B.]

Would studying "metabolic problems" potentially reveal why a subset of patients have a tendency to have postprandial hypoglycemia? More generally, some problem maintaining adequately high blood sugar after sweet meals, or when eating infrequently.

 

[Sasha]

Good news: NIH scientist Jay Chung will be using the Solve ME/CfS biobank to look for metabolic problems. Chung is on the intramural team for the inpatient study as well. This is the first concrete collaboration between NIH and the community in this new era - the first of many, I hope.

http://solvecfs.org/Solve ME/CFS Initiative Provides BioBank Samples to NIH Researcher

A note on Zaher Nahle, Solve's rresearch director, who facilitated this collaboration: I met him last fall and was impressed by his enthusiasm and knowledge. He said he turned down better-paying jobs to work on ME. Ya gotta love that.

That's very good news.

I'm also impressed by Zaher Nahle.