CFSAC Meeting Scheduled for January 13, 2015

[Nielk]

Barbara (DFO):
Thanking working group for a great job.
They will go through the entire report prepared by this working group. There will be a discussion and then vote on the final document.

 

[Nielk]

They can't hear us, right?

We're in listening mode only..

 

[Wally]

They can't hear us, right?

That is correct.

 

[Jessrose21]

Thanks, Niel.

 

[Nielk]

Anne Keith - testimony

Reject p2p enterely -
It's unscientific. Oxford base - relying on pace. Only our expert definitions should be accepted.
CDC refusal to delete harmful info on website.
Disease written with lack of knowledge is accepted but not from our own experts?
Patients are suffering from abuse.

 

[Nielk]

Anne keith again presenting - for Deborah Waroff

 

[GalaxiiGrl]

Anne Keith's statement on behalf of Deborah Waroff was cut off, blamed on bad reception. "In the interest of time" they moved on to Robert Miller's statement, in which he is singing the report's praises.

 

[Nielk]

Robert Miller:
30 year patient and 17 yr advocate.
Thanks working group.
Never seen such a report from government. The results mirror what patients and advocates have been saying for years.
Now it's official.
More involvement by trans - NIH. Me/CFS is physiological not psychologial.
Asks CFSAC to include asking 25 million dollars for funding.
We need to be united.

 

[Keela Too]

Will they go back for the rest of Deborah's message?

 

[Nielk]

Will they go back for the rest of Deborah's message?

They did.

 

[Nielk]

@Denise - do you have your comments to post here?
Thanks.

 

[Nielk]

Eileen Holderman -

CFSAC recommended to work on criteria starting with CCC. 50 experts and 170 advocates signed letter to adopt CCC.

HHS forged ahead on a mission to redefine CFS with an erroneous definition.

They recommend GE/CBT and antidepressants. They don't want to pay for research and disability.
They will miseducate and are acting in bad faith. We are protesting this.

 

[Denise]

My comments:

The biggest drawback of the P2P process is that the most crucial question - “Is ME as defined by CCC and ME-ICC the same as cfs as defined by Fukuda and Empirical” - was never addressed.


Neither the evidence review nor the P2P workshop agenda were designed to examine that question and the panel was not given the information needed to enable them to make this distinction.


This means the evidence review and panel recommendations continue equating ME and cfs. And while the reports says this illness is not psychiatric, the section on “Improve treatments ” focuses on biopsychosocial, CBT, GET and multimodal, all of which, particularly in this disease, are rooted in a belief that the disease is psychological. ME and cfs are not the same.


As with your March 2014 Education recommendations, the CFSAC must clearly identify the illness your P2P comments refer to.


You must urge the P2P panel to be explicit about the illness their report refers to.


I believe the report must be strengthened by:

• Requiring ME biomedical research funding levels to be appropriately increased and sustained long term at a level commensurate with the burden of disease.
  
  
• Addressing the institutional barriers at NIH that have impeded meaningful engagement by any institute
  
  
• Disowning the biopsychosocial model as it has been applied in "cfs" under the false theory that the disease is perpetuated by a fear based avoidance of activity and resultant deconditioning
  
  
• Calling for improved treatments that do far more than address self-management and psychological therapies
  
  
• The educational recommendation must include a specification that education uses content specific to the disease as defined by the CCC
  
  
• Prioritizing all of the panel's recommendations
  
  
• Incorporating a realistic time-line for implementation of the recommendations
  
  
• AND because of the repeated lack of Federal openness and transparency regarding ME, and the decades long lack of meaningful progress, I believe the panel should include strong recommendations for congressional oversight.
  

Please post your agreed upon document immediately following this meeting.


The comments you approve today may or may not capture everything you as an individual think is important for the Panel to know. CFSAC members, you are permitted to submit comments to the Panel as an individual in addition to whatever CFSAC approves today. I hope that if you have additional or different comments on the report, that you will take the time to submit your individual thoughts to the Panel by Friday.

 

[Nielk]

Matina Nicholson -

Attended one day of P2P.
We really to define which disease are we studying ME or CFS. Jason said we need to have the right criteria before anything.
Get is harmful. We need biomedical research. We need change..
We heard there have been changes made to the wrkshop report.

 

[Nielk]

Jeannette Burmeister;

She sent an e-mail to Barbara the report was edited (i Heard) after submission by the committee.
she didn't get a meaningful reply. She asked again. If it's true she wants us to see both documents.
The public need to see the edits by the government. Is the committee independent of government manipulation?
This would be a violation.

 

[Nielk]

Donna Pearson will present the document for comment to P2P.

 

[Wally]

I have posted a status update, regarding my inquiry to the NIH/ODP regarding Public Comments submitted in response to the P2P Draft Report and P2P Worshop, on this thread http://forums.phoenixrising.me/index.php?threads/the-p2p-draft-report-is-out.34480/page-34 at Reply #673.

I received the following message in response to the e-mail I sent to Paris Watson - ODP/NIH this morning (1/13/2015).

FW: Outstanding Questions re Public Comments submitted in response to the NIH/ODP ME/CFS P2P Workshop and Draft Report

Tue, Jan 13, 2015 8:43 am
From Peterman Cross, Wilma (NIH/OD) [E] petermaw@mail.nih.gov
To ****
Dear Ms. Kreutzer,

The email below was forwarded to me for follow up. I would welcome the opportunity to chat with you via phone to discuss the issues you have raised. I am available today (Tuesday) at 1:30 pm or Wednesday from 1-3 pm. Please let me know if you have some availability during these times or if we need to explore additional times/dates to accommodate your schedule.


Many thanks –


Wilma Peterman Cross, M.S.

Deputy Director

Office of Disease Prevention

National Institutes of Health

6100 Executive Blvd, Suite 2B03

Rockville, MD 20852

Phone: 301.496.6614

I am currently listening to the CFSAC meeting, so I am unavailable today (1/13/2015) at 1:30 pm (EST) for a phone call with the ODP/NIH. The only time I am available tomorrow (1/14/2015) during the time period (1:00 -3:00 pm EST) Ms. Cross has provided for this phone call is 2:30 pm (EST). If there are other advocates who would like to join me in this phone call tomorrow at 2:30 pm, please PM or e-mail me at WallaceAlvinCleaver@gmail.com and I will see if a conference call can be set up for the phone call with Ms. Cross.

Wally (Susan Kreutzer)

 

[Nielk]

It's Impossible (for me) to follow this WITHOUT SEEING THE DOCUMENT!

 

[Nielk]

Gabby Klein's testimony


I have sent in as my written comment a copy of my letter to Secretary Burwell expressing my complete opposition to the P2P. I hope that you each had a chance to read it.

I will describe some of my points in the hope of convincing you, the CFSAC voting members, to consider making an official statement of opposition to the P2P.


The history of abuse and neglect by HHS towards ME/CFS patients is long. They have tried to blatantly deny the true severity of the biological neuro-immune disease, ME. Their means of accomplishing this included switching the original name ME to CFS and by setting the vague fatiguing criteria; the Fukuda. Since then, HHS continued their control and manipulation by consistently and stubbornly refusing to accept any newer and better defined criteria set by the ME/CFS medical experts despite the fact that historically, diagnostic criteria for diseases are created by the expert medical community, not the Government.



At the November 2012 CFSAC meeting, voting members tried to alter this devious path by recommending that a workshop be convened of ME/CFS stakeholders to work on reaching a consensus for a case definition starting with the Canadian Consensus Criteria.


HHS had the perfect opportunity to change their previous malfeasance and do what is right for the patient. Despite and “in spite” this CFSAC’s recommendation, HHS forged ahead with two expensive ill conceived government controlled processes – the IOM and P2P.

.


The P2P process should never have been used for the controversial topic of ME/CFS. In addition the parameter set by NIH for the study, doomed it to a meaningless result.


· They lumped in all 8 criteria, as if they are of equal value.

· They use an evidence based study which is inappropriate for this disease, ensuring the exclusion of over 1,000 studies.

· They use a “jury model” non-experience panel with a feat to come up with a report in 24 hours.


Not surprisingly, the resulting draft report is unscientific, disturbing and dangerous. I hope that you will join me and multitudes of stakeholders, advocates, patients, caregivers and clinicians in stating the following:



We do not need more Government misinformation about ME/CFS which will be disseminated to physicians, health insurance carriers, the public, and the press.


Thank you!

 

[Nielk]

They are going through all the changes they have asked for line by line from the draft report. Hopefully we will se a copy of the final revisions.