CFSAC Meeting June 20 -21 2018 Announcement

[Diwi9]

Derya Unutmaz is going to be up at 1:00 Eastern.

 

[Hope123]

I was a bit surprised that Amrit was so disparaging toward advocacy groups not working together...I see the exact opposite thing happening. Then, along comes Cindy Bateman spoon-feeding the federal government with a healthcare model she's investigated by way of her non-profit...when federal agencies should have the institutional knowledge to make propose these changes. Imagine if Cindy Bateman were in a federal appointment...she's so productive...glad she's on Team ME!

I agree with you. I'm not sure what history she has with the patient advocacy community but patients and their supporters have been working VERY hard for years to get the government to respond. People who are new to this community think we are "demanding" too much don't know the history and how every step has been hard-fought, both on the inside through Congressional meetings and the outside through protests for example. We're not here to be government lackeys or boot-lickers: the government should be working FOR us, not the other way around. And I say that as someone with family members who retired from the feds and conveyed that idea to me.

I don't always agree with the methods others have used (and I'm sure they have not agreed with what I do at times) but I always think it's egregious/ arrogant when someone tells someone else that they're "protesting wrongly." For another, in most successful social movements, it takes both conservative and radical acts to get things done and it's only in retrospect we see which actions moved the ball ahead.

So I'm glad that Courtney Miller and Carol Head talked about and praised what patients and advocates have done.

 

[Hope123]

Arrghhhhh ......Amrit Shazhad is continued to lecture the patient community about "our lack of objectivity." That really torques me off. A lot of people have advocated 'objectively' for years to decades AND it's BECAUSE of that, COMBINED WITH PASSIONATE advocacy that has pushed the field forward.

It's the same-old blame the patients and put the onus of patient advocacy groups.
There has to be a balance of duties and responsibilities between patients, the government, nonprofits, academia, and industry. It's one thing to be "lectured" by government officials and others -- that's half-expected -- but we don't need that from our own side.

 

[Diwi9]

Arrghhhhh ......Amrit Shazhad is continued to lecture the patient community about "our lack of objectivity." That really torques me off. A lot of people have advocated 'objectively' for years to decades AND it's BECAUSE of that, COMBINED WITH PASSIONATE advocacy that has pushed the field forward.

It's the same-old blame the patients and put the onus of patient advocacy groups.
There has to be a balance of duties and responsibilities between patients, the government, nonprofits, academia, and industry. It's one thing to be "lectured" by government officials and others -- that's half-expected -- but we don't need that from our own side.

So true...but at least it sounds like she is busy at work. She does have industry contacts. At the same time, no disease is perfectly profiled within its various subsets...all clinical trials have some element of problems with this.

 

[Hope123]

So true...but at least it sounds like she is busy at work. She does have industry contacts. At the same time, no disease is perfectly profiled within its various subsets...all clinical trials have some element of problems with this.

I'm not annoyed at her for her work but she could have thanked the government officials and others WITHOUT the disparagement of patients and advocates. THAT was not needed nor is it helpful.

 

[Diwi9]

I'm not annoyed at her for her work but she could have thanked the government officials and others WITHOUT the disparagement of patients and advocates. THAT was not needed nor is it helpful.

I think we're on the same page.

 

[Diwi9]

FWIW - Donna Pearson is a rockstar on CFSAC

 

[Sing]

This was a very good two-day session overall, which I recommend listening to in whole or part, when we get a link.

 

[Gemini]

This was a very good two-day session overall, which I recommend listening to in whole or part, when we get a link.

Have watched CFSAC meetings since inception & agree with @Sing it's worth a listen when the link is posted.

I thought especially promising:

1. Work of the Pediatric Education Workgroup advising pediatric patients, their families, and educators about the impact of ME/CFS; providing management guidelines matched to degree of disability; endorsed by CDC and Dept of Education; and available on-line. I'd give it a grade of A+.

2. Courtney Miller's Simmaron Research Update and plans to study treatments: ampligen, antivirals, amino acids, IVIG, IV saline that address immune modulation/antibody replacement, viral load, raw materials, blood volume, and other factors, endpoints being NK function and VO2 max improvement. Looking forward to hearing more about this..

3. Prof. Unutmaz's focus on the immune system, microbiome, and metabolism; collaboration with the Lipkin and Hanson Collaborative Research Centers; and use of US and UK biobank samples for studies.

4. The "existence" of a Clinical Trials and Treatment Workgroup.

5. Including the Department of Defense on the Committee.

6. The excellent "Public Comments," as always.

 

[Gemini]

FWIW - Donna Pearson is a rockstar on CFSAC

Glad Donna said CFSAC name should be changed to MECFSAC. And knew why & how to do it without the need for a new "Recommendation." An real asset to the Committee, hope she can stay on beyond her term @Diwi9.

Didn't realize she has CVID. I have a Primary Immune Deficiency(PIDD) too. And years ago there was a group of patients on the IDF forums with both PIDD and ME/CFS which might form a subgroup.

Nancy Klimas' lab discovered mine running a comprehensive immune system panel; GP's don't usually test for them and it can take someone many years to be diagnosed.

Hopefully, Mark Davis and Derya Unutmaz will look for PIDDs. With his intent to determine "What Disease does the Person Have" vs "Which Person Has this Disease" perhaps Unutmaz will pick them up.

 

[Gemini]

@Emily Taylor would it be possible for you to give us some more detail on Carol Head's "Public Comments" about study participant selection criteria for NIH's ME/CFS intramural study? Carol seemed concerned.

And it appears from NIH updates very few participants have been enrolled to date.

 

[Diwi9]

@Emily Taylor would it be possible for you to give us some more detail on Carol Head's "Public Comments" about study participant selection criteria for NIH's ME/CFS intramural study? Carol seemed concerned.

And it appears from NIH updates very few participants have been enrolled to date.

Good question! The selection criteria are so strict, it makes one wonder who exactly they will be studying. Also, since one must not be sick for longer than 5 years, I'm going to guess that autoimmunity will not be as strongly expressed as it might be in longer-term sufferers.

 

[Tom Kindlon]

https://twitter.com/i/web/status/1020699295639629825