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

Wilhelmina Jenkins said:
There is actually no way to tell whether you were deliberately shut out of a call or if they just didn’t get to your call. I’m pretty sure that all of us have been left out at one time or another. The issue of denouncing GET & CBT were brought up by at least 2 other callers and received a poor response. None of the questions were answered adequately.
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Thank you for pointing this out, I had no idea. The way the tweet was worded made it appear like the caller was deliberately shut out.

Webdog said:
The CDC website was also essential in my successful discussions with Kaiser Permanente.

However, I made no progress when directly asking the CDC to comment on the PACE evidence for GET. They simply would not comment on PACE, period. Head in the sand pretending PACE never happened.

The CDC first tells me everything they do is science based, then they cherry-pick which peer reviewed published science they will and won't acknowledge. Appalling.

Off the record (anonymous inside source), I was told that some in the CDC still believe:
  • GET can be beneficial for some patients, and the CDC won't remove this treatment option for doctors who want to use it.
  • Not exercising is certain to cause health problems.
  • Should the CDC say that GET is not recommended or harmful, some patients might use that as an excuse to not exercise at all. In other words, the CDC doesn't trust patients to properly manage their level of exercise.
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Dolphin said:
Lots of the sympathetic clinicians the CDC uses in its study recommend some form of exercise, so in some ways it's not that surprising.
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Do these clinicians specialize in ME/CFS, or do they even know about PEM and the long-term consequences of forced continuous physical activity in ME/CFS? If not, I don't understand why the CDC would value their input for a disease whose *core symptom* effectively discards any recommendation about exercise that can be applied to persons without chronic illnesses, where it is indeed beneficial, and those affected by them, where it may be beneficial to some extent.

I'm not saying that CDC clinicians should hold back from working on ME/CFS. As many as possible should. But like any other condition they may treat, their first step should be to understand the (general mechanisms of the) disease. The core symptom, PEM, is listed in all four common diagnostic criteria (Fukuda with PEM, that is). Or is there some kind of an exception for ME/CFS? This seems surreal.

CDC clinicians wouldn't tell a bedbound or housebound person infected with Covid19 to exercise. If you had just recovered from such an infection, they -- along with any GP, physio, personal coach/trainer -- would tell you to take it easy for a few weeks by *reducing* your pre-illness activity level.

dave30th said:
The CDC has always refused to criticize PACE. Since it is the lead public health agency in the US, its refusal to criticize a study it recommended for years is a disgrace--an abandonment of core principles of public health. I have slammed them over this failure repeatedly.
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Are there legal reasons that would prevent them from admitting their wrongdoing? I'm thinking that it may expose them to class actions, surely the CDC doesn't want that.

A crappier but entirely possible reason is that they're scared of damaging their reputation. Not only that of the CDC, but of every individual who has been part of the ME/CFS working group during the time that they still officially supported the PACE trial.
 
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cassava7 said:
Do these clinicians specialize in ME/CFS, or do they even know about PEM and the long-term consequences of forced continuous physical activity in ME/CFS? If not, I don't understand why the CDC would value their input for a disease whose *core symptom* effectively discards any recommendation about exercise that can be applied to persons without chronic illnesses, where it is indeed beneficial, and those affected by them, where it may be beneficial to some extent.

I'm not saying that CDC clinicians should hold back from working on ME/CFS. As many as possible should. But like any other condition they may treat, their first step should be to understand the (general mechanisms of the) disease. The core symptom, PEM, is listed in all four common diagnostic criteria (Fukuda with PEM, that is). Or is there some kind of an exception for ME/CFS? This seems surreal.

CDC clinicians wouldn't tell a bedbound or housebound person infected with Covid19 to exercise. If you had just recovered from such an infection, they -- along with any GP, physio, personal coach/trainer -- would tell you to take it easy for a few weeks by *reducing* your pre-illness activity level.
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Some US experts who have recommended exercise:
Susan Levine;
Lucinda Bateman;
Nancy Klimas;
Peter Rowe;
Ben Natelson;
Anthony Komaroff (I have only heard this from his clinical practice rather than see it in a piece he wrote).

Edited to add: Charles Lapp
 
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Dolphin said:
Some US experts who have recommended exercise:
Susan Levine;
Lucinda Bateman;
Nancy Klimas;
Peter Rowe;
Ben Natelson;
Anthony Komaroff (I have only heard this from his clinical practice rather than see it in a piece he wrote).
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That is harrowing.

I hope their views have changed over time and they've stopped recommending it; it seems to be the case with Lucinda Bateman? [1]. Though I believe Nancy Klimas was a co-author on a recent paper that mentioned GET in a positive way.

[1] https://annals.org/aim/article-abst...chronic-fatigue-syndrome?doi=10.7326/L15-5174
 
cassava7 said:
That is harrowing.

I hope their views have changed over time and they've stopped recommending it; it seems to be the case with Lucinda Bateman? [1]. Though I believe Nancy Klimas was a co-author on a recent paper that mentioned GET in a positive way.

[1] https://annals.org/aim/article-abstract/2473522/treatment-myalgic-encephalomyelitis-chronic-fatigue-syndrome?doi=10.7326/L15-5174
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To me a big part of the problem is the way the term exercise is used and understood. I think most ME specialists, such as those listed above, use the term exercise to mean as much movement as is tolerated by the PwME. The problem (again, this is my interpretation) is that the rest of the world understands the term exercise to mean aerobic exercise. And there's a BIG difference between the 2 things which causes problems for PwME.
 
Denise said:
To me a big part of the problem is the way the term exercise is used and understood. I think most ME specialists, such as those listed above, use the term exercise to mean as much movement as is tolerated by the PwME. The problem (again, this is my interpretation) is that the rest of the world understands the term exercise to mean aerobic exercise. And there's a BIG difference between the 2 things which causes problems for PwME.
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Well I don't like the way many of these experts have discussed exercise in the past. See for example this article:
 

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cassava7 said:
That is harrowing.

I hope their views have changed over time and they've stopped recommending it; it seems to be the case with Lucinda Bateman? [1]. Though I believe Nancy Klimas was a co-author on a recent paper that mentioned GET in a positive way.

[1] https://annals.org/aim/article-abstract/2473522/treatment-myalgic-encephalomyelitis-chronic-fatigue-syndrome?doi=10.7326/L15-5174
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If Lucinda Bateman has changed her position, that would be great. She wrote stuff which frustrated me in the 2000s (another one attached), but I have seen less frustrating stuff by her in recent years. I wouldn't read too much into a short letter where she was not the lead author.
 

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cassava7 said:
Are there legal reasons that would prevent them from admitting their wrongdoing? I'm thinking that it may expose them to class actions, surely the CDC doesn't want that.
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The only positive feature of the US health care system is tort. Oh boy is there a lot of tort in US health care.

There definitely will be huge lawsuits, plural, once this happens. Many of the private providers will be sued, in addition to the CDC itself, for having knowingly given harmful and misleading advice that resulted in massive harm to public health. As a failure, this is almost as big as the early failures of the AIDS crisis. Really not a good look to fail twice over this big, and actually worse this 2nd time considering the lessons that should have been learned from all the earlier failures, especially as it relates to denying disease purely out of ideology, a sort of concentrate of the worst features of many past failures.

Other countries have some immunity built in, but Americans love to sue and so do they will. And actually in this case it's necessary because there was both enormous harm and foul, this wasn't simple negligence, it happened through deliberate, careful planning and far too many warnings about how disastrous this would be. The CDC plainly acted against the public interest and harmed public health. This is the one and only role of this agency and it failed, again.
 
I think that proving deliberate malpractice is going to be very hard. Since there is no evidence that any treatment is useful, CDC can point to “evidence” in peer reviewed journals from “respected” researchers in GB to back up their recommendations. Especially since the usual statement from CDC was on the order of “CBT and GET may be helpful”. Patients who were recommended exercise by their physicians would have to prove that the worsening of their symptoms was due to the exercise, not just the disease itself.

It was mentioned above that physicians here are afraid of the negative effects of a sedentary existence and most especially being bedridden. I think that this is accurate. I remembered Dr. Lapp saying that he had never had a patient who rested themselves back to health. Most doctors here don’t recommend a rigorous PACE-like exercise regimen, but they don’t point out the dangers of exercise either. Unless there is a study in a peer reviewed journal documenting the dangers of exercise, I don’t think that CDC will state unequivocally that exercise causes harm. (And such a study would be unlikely to be approved.) They may incrementally increase the strength of their mild warnings, but they aren’t going any further anytime soon.

I don’t think that this is malevolent. It is a refusal to accept the experience of patients. No governmental officials gain anything by not being firmer in warning about the negative effects of exercise. I just don’t think that Dr. Unger really believes it.
 
@Wilhelmina Jenkins i ‘liked’ your post because i agree with your interpretation, but it doesn’t mean i like it.

i believe there is much work to be done for patients in getting access to the right information and the right recommendation. There would be great improvements in changing the wording from exercise to activity, while keeping in mind personal limitations and ceiling of what someone can do without triggering a crash. In the several year since the publication of the Light’s paper on gene expression following exercise which may well be the best evidence of harm following exercise, there has not been much progress other than 2 teams (Stevens, Keller) providing objective evidence of abnormalities of aerobic exercise, and most recently the one doctor that does invasive monitoring with exercise challenge.

it still means that disability insurance companies are successful in forcing employees in pragmatic rehabilitation as a treatment to their deconditioning. It is problematic when the CDC itself is not putting its foot down. It means that patients are harmed.

But I know you know that.

It is disheartening that things are moving so slow.
 
rvallee said:
It's a weird strategy by the CDC because they are angering everyone in the process. The ME deniers dislike that they pretend to take it seriously and the patients are furious because it's all symbolic and clearly the CDC is just waiting for this to blow over, somehow, and never face accountability for their ongoing failures. Maybe swoop in once the hard work has been done and claim credit, but that's not going to work either.

So I'm not sure what's even the point of this, there will be no recognition in hindsight for those "efforts", it's the same tired old pretending to care but not actually doing anything, the insult is different but the outcome is the same. It will not even factor in the inevitable lawsuits as a sincere effort and certainly will not stop them from happening.

I get that it's being between a rock and a hard place but the current approach is almost more problematic for them in the long term, as they are now showing they are aware of the impact but simply can't be bothered to do anything more than pretend, which is not different from the last 3 decades.
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I agree that lawsuits can be made possible. Terminal legal clarity can arrive.

Wilhelmina Jenkins said:
My own feeling is that Dr Unger is moving forward, but she is moving as slowly as humanly possible. I think that continued pressure from the community and from Congress are the only things that will get her to move more quickly.
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The political constraints on her are inappropriately overbearing and skew the interpretation of existing vs lack of evidence in a way that is questionable Vs the hypocratic oath, even regardless of how legal cookies could crumble (to abuse a phrase...).

I agree with the advocacy/political roles that you highlight as one of the key angles.

Dolphin said:
Some US experts who have recommended exercise:
Susan Levine;
Lucinda Bateman;
Nancy Klimas;
Peter Rowe;
Ben Natelson;
Anthony Komaroff (I have only heard this from his clinical practice rather than see it in a piece he wrote).

Edited to add: Charles Lapp
Click to expand...

Denise said:
To me a big part of the problem is the way the term exercise is used and understood. I think most ME specialists, such as those listed above, use the term exercise to mean as much movement as is tolerated by the PwME. The problem (again, this is my interpretation) is that the rest of the world understands the term exercise to mean aerobic exercise. And there's a BIG difference between the 2 things which causes problems for PwME.
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I agree that what one defines as exercise is critical. The problem is that exercise is often used as a synonym for activity, and suggesting that someone maintains whatever activity they can, is not the same as suggesting whatever exercise they can.

Turn in bed or walk round corner does not equal a jog or weight lifting, for example.
 
Dolphin said:
Some US experts who have recommended exercise:
...
Anthony Komaroff (I have only heard this from his clinical practice rather than see it in a piece he wrote).
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Komaroff is longtime Section Editor for UpToDate's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome section, which recommended GET until late 2018. Most positive references to GET and PACE were removed in late 2018.

Below is a screenshot from UpToDate in April 2018.

https://www.uptodate.com/contents/treatment-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome

uptodate2-png.3301


In 1999, Komaroff did a CFS presentation for the Medical Board of California, which recommended GET. This remains the most current ME/CFS information on any California state government website. Note Komaroff's recommendation for a "Graded exercise program", as well as recommendation to "maintain and gradually increase activity levels".

https://www.mbc.ca.gov/Download/Newsletters/action-report-1999-01.pdf

bestapproach2-png.2027


californiamedicalboardb2-png.2029
 
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Let's be charitable. The science has evolved in breadth and depth, however incompletly. Even PACE was useful in relation to what it was found to have to have not actually found.... (ironic face). So any devil's advocacy then was a bit more excusable. Happy to have good friends now :)
 
Tom Kindlon said:
Transcript now up https://www.cdc.gov/me-cfs/programs/meetings.html



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Sense of urgency: 0.

Level of interest: 0.1.

Boredom rating: 8.

I don't see $5M/y worth of effort here. I'm not even sure I see $100K/y worth of effort here. There appears to be more effort dedicated to the average school fundraiser.

What I see from both NIH and CDC is zero effort, zero will, zero interest, running out the clock so after a while they'll point back at money that was clearly wasted and say "welp, we tried, it was expensive and it amounted to nothing so we'll just move on".

Thanks for nothing.
 
I thought the call was informative, people were asking the right questions. The CDC seems to be doing some good things but I wish it was much more than this.

I've tried to make some highlights on Twitter


1) On 6 February there was a CDC stakeholder call for ME/CFS. The transcript has now been made available: https://cdc.gov/me-cfs/programs/meetings.html… I’ll try to highlight some interesting points in the tweets below

2) Elizabeth Unger of the CDC talked about the multi-site study. She said they are planning 3 manuscripts “based on analyses of exercise testing, cognition testing and NASA lean test data."

They'll share preliminary results at the IACFS/ME conference in June.

3) Unger said they were also thinking of publications that will examine illness heterogeneity, methods for assessing natural killer cell function and natural language processing for automatic extraction of data such as medications.

4) Dr. Dana Brimmer provided an overview of the CDC’s collaboration with Medscape to provide Continuing Medical Education (CME) on ME/CFS.

5) The first CME “Diagnosing ME/CFS - The Experts Weigh In” started on 25/02/2019 and by 31/12/2019 there were over 2,700 test takers who complete the program and earned a certificate.

6) There's already a second course called "ME/CFS: Test Your Strengths and Gaps in Knowledge." with Nancy Klimas, which started on 15/01/202. A third CME with Steven Gluckman is forthcoming and will be called "ME/CFS: A Case-Based Learning Module."

7) Someone mentioned that Gluckman is controversial because his Up to Date article previously recommended GET/CBT. Unger responded that he was proposed by Medscape and is considered influential. His talk will be just about the illness, not about treatment.

8) Nanda Issa talked about the CDC efforts to cover pediatric ME/CFS as an educational topic for school nurses, to raise awareness of the illness and provide guidance on how to identify students with ME/CFS symptoms.

9) In 2018 the CDC awarded the National Association of School Nurses (NASN) a three-year contract to work on this project. NASN is doing a pilot project in six different school districts across four states, namely Florida, Massachusetts, Michigan and Utah.

10) The project includes surveillance of ME/CFS in students who fall ill and providing training on ME/CFS to school nurses nationally. There was also a continuing education session on ME/CFS at the 2019 NASN conference.

11) Unger also mentioned that they've been working on collecting more data on pediatric/adolescent ME/CFS patients and that they collaborating on this with physicians such as Bateman, Klimas but also Andy Kogelnik, Patricia DeLaMora and Amy Smith.

12) Question time. Afton Hall asked why the CDC website doesn’t recommend physicians to use the ICD-10 code G93.3. He explained: “When the physician uses this code, it results in a monthly benefit 60 percent higher than the ones that is used, the ICD code of R53.82…”

13) Unger's response was interesting. She said that they initially planned to mention ICD codes on the CDC website but that it was considered inappropriate to do so because this is supposed to be entirely left to the physicians – it would be considered guiding too much.

14) The branch of the CDC that deals with coding, the National Center for Health Statistics (NCHS), apparently explained that ICD codes are not intended to be used for insurance or reimbursement or anything like that.

15) Unger explained that the NCHS told her that “changes in coding really come from initiatives that are started in the professional medical organizations and that would be the way to probably get the best traction on this issue.”

16) People also asked why the CDC didn’t take a clear stance on GET/CBT. Unger said its complicated and that they are recommending pacing as a balance between "maintaining an exercise regime as much as possible and avoiding overexertion that will illicit post-exertional malaise.”

17) Someone also asked if the CDC are looking into COVID-19 and a possible relationship with ME/CFS. Unger said that “the means to study that are very difficult to put in place and they don't exist yet, but it's definitely important to keep in mind.”
 
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