USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

So, they don't have patients input when planning these things...?

Wouldn't be surprised if they thought this would be well recieved - and that they were progressiv and 'on the edge' for promoting pacing, not that pesky cbt/get that patients get upset by

Completly missing that pacing is nothing more than a coping mechanism, stemming from patients themselfs. Litteraly presenting patients with a solution they came up with, and have insisted on getting doctors to understand the importants of for decades.

 

CDC Stakeholder Engagement Webinar 16 Sept 2019

3:00 pm - 4:00 pm Eastern Daylight Time

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

participants can either call in using the following information:

Call number: 1-888-989-4409

Participant Code: 8773805



or join the meeting using the webinar format by clicking the link, or copying and pasting it into your browser.

https://adobeconnect.cdc.gov/r4wnwwqqzvs0/

If you have never attended an Adobe Connect meeting before, it is recommended that you test the connection before the call date:

Test your connection: https://adobeconnect.cdc.gov/common/help/en/support/meeting_test.htm

Get a quick overview: http://www.adobe.com/products/adobeconnect.html


Meeting Agenda



3:00pm Welcome and SEC Call Overview



3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

Branch Chief, Chronic Viral Diseases Branch

Centers for Disease Control and Prevention



3:15pm “The Biology of ME/CFS: Emerging Models”

Anthony L. Komaroff, M.D.

Simcox-Clifford-Higby Distinguished Professor of Medicine, Harvard Medical School

Senior Physician, Brigham and Women’s Hospital, Boston, Massachusetts



3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC



Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.



Please note that questions for the Guest Speakers and CDC can be submitted only via email at MECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls. If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov.



Contact for MECFS-SEC Conference Call:

MECFSSEC@cdc.gov

 

Reminder all questions MUST be submitted in advance. (Unlike the NIH format that allows for questions for instance arising from the speaker's talk and allows for follow-up questions/clarification.)
MECFSSEC@cdc.gov

 

I certainly hope he won't! (Even if he has a good singing voice.)

 

Bumping this up since the call is next week.

https://www.cdc.gov/me-cfs/programs/meetings.html

PS. No, I'm not super organized, I just happened to read about the call when looking at the CDC website so I went looking for this thread!

 

It seems that most ME advocates have given up on the CDC. Not much is happening there that is remotely encouraging and it looks like the expectations are so low that most don't bother following up with them.

Nothing so far has given me reason to think otherwise. It would be worth having them be relevant but that takes so much energy and commitment while the NIH and even Congress are a better target for the little efforts that can be summoned.

It would take healthy allies to hold them accountable. We just don't have that yet and no one wants to be confrontational for risk of completely souring whatever little input they have in the process.

 

Healthy allies will not be enough to make them accountable. I'm not sure what will

 

For those wanting to learn more see the NIH transcript from the NIH call last month where Unger from the CDC waffled was questioned- linked in this tweet from @Simon M who provided a CDC summary. Patients such as @Wilhelmina Jenkins did a good job calling out CDC BS. Folks calling in made it crystal clear that CDC "patient engagement" was clearly one way.
https://twitter.com/user/status/1174772403991396357

 

okay, here are two of the best quotes from the NIH call ref: CDC/Unger
transcript : https://www.nih.gov/research-traini...mecfs/nih-me/cfs-advocacy-call-august-19-2019

Thank you Sandy Stone

Thank you Liz Burlingame

[cut-off at that point]

 

Cripes. That was a total disaster. Completely tone-deaf. Unger is utterly useless and provides no leadership whatsoever. No progress will be made at CDC with her at the helm of this process. The entire process is unaccountable and it's obvious that no one involves thinks this is important, they are humoring us and barely making an effort at pretending to.

The comments were great, especially Wilhelmina. The responses were a dumpster fire. Zero patient engagement, in fact this is overt dismissal. You can almost feel the eye-rolling in the transcript.

Worst of all, this is still improvement from the last 30 years, however tiny. Meanwhile the NIH spend $20M on musical therapy. Good grief.

Worth copying this comment:

The response is basically: whatever.

 

Totally agree. The missus was livid after reading it. What stood out for her was the "message" that the CDC can't do anything about educating doctors/health providers/states, and that the patients and patient supported organisations are in a better position to do this - I believe they even mentioned Solve in this respect. Uggghhh. There is NO accountability at the CDC. $5 MILLION a year and we don't really know what they are doing with it.

My take is there is no diagnostic test and no treatment, so their mission is to continue to sweep ME under the carpet - no-one there wants to be the one creating a panic. If the CDC tells doctors 1 million folks are affected, it's a disease with a worse QoL than MS, no diagnostic test and no treatment, it will only lead to more questions on what the government is doing about it - which they don't want.

 

Had not read this before; found it when reading stuff about Hillary Johnson/Oslers web after listening to @ScottTriGuy interview with her.

http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

"
I want to thank Professor Racaniello for letting me invade his space to post this very long story."...........eight years later......

 

Thank you, @Sly Saint for posting this excellent article.

I've read it and forwarded it more than once in the past to The Powers That Be.

I recall Dr. Schweitzer's vivid description in this article of the pain in her eyes - "It felt as if somebody had hit me in the back of the head with a baseball bat, and someone else was trying to unscrew my eyeballs with a pair of pliers.”

That is how the pain has felt in my eyes. I lacked for a good description of this pain, and Mary Schweitzer's words filled this gap.

Sometimes, maybe even often, it's difficult to describe this terrible hell.

Thank you very much @dave30th for your work and dedication to this topic.

ETA: added one letter.

 

I read the book Osler's Web early on back around 2008. It was excellent.

It looks like the US CDC was infiltrated by the insurance lobby who'se primary concern was to limit payouts on disability payments. Policies are limited to a two year payout so their plan was to get CDC to push unsupported propaganda that ME was a mental disorder. To that aim they rejected any physical research and limited the research budget to a paltry 1 million per year.

It was only because of ME activists that they finally relented and accepted physical findings like research with two day exercise tests.

 

I would argue they have NOT accepted this. The experience of many patients with their work place disability as well as the stance at major medical centers in the US shows we are a long way from ME being recognized as a distinct acquired disabling disease.

From the Mayo website: (Dr. Beth Unger at the CDC has had this nonsense brought to her attention (repeatedly) and yet it is still on their website.)

Therapy
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.

• Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
• Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen."

I am also deeply concerned that the current medical education in the US is inadequate for diagnosing and proper treatment of ME as originally defined by Ramsay or as defined by the ICC. The insurance companies do not want to pay for the testing that could rule out many diseases or the testing that could lead to better treatments for immune dysfunction or things like Vit D or B12 deficiencies.

I think there is a perception that we are a LOT further down the road to proper diagnosis and treatment than what we are seeing on the front lines of patients going to their doctors.

Link to Mayo: https://www.mayoclinic.org/diseases...gue-syndrome/diagnosis-treatment/drc-20360510

 

I agree and would add that ME isn't a recognized disabling condition on the US Social Security Administration list of disabling impairments despite the fact that 75% of ME patients are unable to work. https://www.disability-benefits-help.org/disabling-conditions

It is to the government's and insurance company's benefit that they minimize ME, this reduces the number and size of payouts.

SSA even produced a memorandum on ME showing all the detail each doctor had to provide to qualify a person for their disability benefits. If they were honest they would just add it to the list of disabling conditions.

https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 

Right. Good to understand though that disability under social security relies on actual ability to work and not the diagnosis. Previously the label was CFS and they had information in the SSI ruling that led to the ICC. (https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html)

"In 2003, an expert subcommittee of Health Canada, the Canadian health agency, convened a consensus workshop that developed a clinical case definition for CFS, known as the Canadian Consensus Criteria (CCC).[3] In 2011, a private international group developed guidelines, known as the International Consensus Criteria (ICC),[4] for diagnosing myalgic encephalomyelitis (ME).[5] Members of this international group and other medical experts consider ME to be a subtype of CFS.[6] We adapted the CDC criteria, and to some extent the CCC and ICC, when we formulated the criteria in this SSR."

Now the guidance (as far as I could find) uses Systemic Exertion Intolerance Disease and not the CCC or ICC. (https://www.ssa.gov/disability/professionals/documents/64-063.pdf)

"This fact sheet is a guide to assist you in providing the kinds of medical evidence we need to evaluate disability claims filed by individuals with ME/CFS (also known as exertion intolerance disease, or SEID)."

With the general consensus seeming to be that we can "gradually increase activity" or "overcome intolerance" the disability rulings are too often 18 months with an expectation that patients are going to recover to return back to work. I think we all know that is not the normal reality of ME.

 

My comments from this earlier link re historical government expectations of disease duration (my bolding this thread only):

https://www.s4me.info/threads/how-m...in-me-cfs-nacul-et-al-2019.11346/#post-202721

Government language may have improved, but has medical education? No; we have a long way to go.

@Colleen Steckel, I agree with your message. Despite new changes at the top of the health care pyramid, medical consults are still fraught with disbelief, dismissal, lack of any knowledge about this devastating disease. I think it was on Unrest, Dr. Nancy Klimas said we are still graduating medical students without any knowledge of ME (paraphrasing). Granted Unrest only came out in early 2017. Since then we've had cme programs of various types, as well as more appropriate and informative articles, however, many, if not most physicians have still never heard of ME.


From earlier link as noted above:

Regarding phases of ME ("cfs"), in 1989 Health and Welfare Canada held a workshop, and published the results in 1991.

The introduction says: "The purpose of this meeting is to review what we know about CFS, make recommendations and prepare guidelines concerning the diagnosis and management of CFS, and discuss various approaches for future research."

Of particular interest are pages 59 to 71 of this link.

On page 59 discussion included the issue of clarifying how "chronic psychiatric disease", and "malingering" featured, or did not feature in the Holmes' definition:

http://publications.gc.ca/collections/collection_2016/aspc-phac/H12-21-1-17-S1-eng.pdf

This workshop and the ensuing publication concluded "CFS is a triphasic syndrome: Phase 1 - (lasting 3-6 months), an acute phase of greatest illness. Phase 2 - (lasting 3-24 months), a phase of slow improvement. Phase 3 - stability at an improved functional level usually subjectively less than 100% (no inexorable downhill course)."

Based on the above government information, I was told I would recover in one to three years. I waited, puzzled, and concerned that I didn't seem to be improving, and the three year deadline was fast approaching. Over 30 years on I know this information is at best extremely optimistic for many pwME. We are still waiting for more definitive information about the natural course of this disease.

In August 2009, CFIDS of America reported on a survey of 1,784 respondents: " Only 4.4% have been ill less than two years; 62.1% have been ill more than 10 years....63.3% are fully or partially disabled or retired from work..."

Several other questions including work, full or part-time, receipt of disability income, number of medical consults etc. were also included in the survey.

I have been unable to find the link to the above. I have a photocopy of the info without a link noted. It would be interesting to see more survey results like this one.

The gap between what pwME experience and what policy and decision makers portray is very difficult to describe in positive terms.

However, thirty years on we finally have some good news in Canada.

I hope this more enlightened policy catches on in the UK and elsewhere!

ETA: Also, looking back, by the time I was told I would recover in one to three years, I had been very much worsening for two years, and had had a total of about 6 years of gradual onset with new and increasing health issues added on over time.

Initially, my gradual onset could have been seen as mild ME. With continuing to work, and press on as usual, which included lots of exercise, the ME worsened.

ETA #2: quotation marks added.


Time for more surveys like the 2009 one from CFIDS of America? Do we have any?

 

https://twitter.com/user/status/1202205550559334400