CDC responds to false SMC factsheet claim

R

Robert 1973

Senior Member (Voting Rights)
On 26 March I sent to following question to the CDC:
‘A recently published "factsheet" about "CFS/ME" by the UK Science Media Centre states:
“After sustained pressure from activists the CDC has removed mention of CBT and GET from its website and currently states that there is no approved treatment for CFS/ME despite evidence to the contrary." (http://www.sciencemediacentre.org/cfsme-the-illness-and-the-controversy/)

Please can you confirm whether the SMC statement is accurate? ‘
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2 months the later (after 3 further requests for an answer) the CDC has responded:
Thank you for your inquiry regarding ME/CFS and CBT/GET. CDC is currently revising its ME/CFS website and has posted the section for the General Public. In this section CDC refers to managing activity on an individual basis for patients with ME/CFS. The revised healthcare provider section will be posted soon and in this section there is a new information on tools that can help symptom management, which includes monitoring physical and cognitive activities. CDC made this round of changes based on recommendations in the 2015 IOM report on ME/CFS as well as feedback from stakeholders (patients, healthcare providers, medical professional and education groups, and foundations) summarized in the Roundtable report that is posted on our website.

Sincerely,

CFS Program
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Details of the Roundtable report can be found here:
https://www.cdc.gov/me-cfs/programs/meetings.html

I note that the SMC has now revised its “factsheet”, which now reads:
“The CDC has removed mention of CBT and GET from its website and currently states that there is no approved treatment for CFS/ME.”
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Unfortunately, the SMC makes no mention of the change and has not issued an apology.

The original “factsheet” is archived here:
https://web.archive.org/web/2018032...re.org/cfsme-the-illness-and-the-controversy/

I’ve not checked to see if any more changes have been made.
 
Is all about liability legally. They will never admit wrong. If they do, they can be sued for any person that was harmed by those recommendation.
Removing it is the right step on the right direction. Best we can ever hope for.
 
@Robert 1973 - just an FYI in case its useful to you

CDC updated its website on May 18 and added a section on managing PEM. Some of the text is better but the statements about exercise could suggest the only problem is with vigorous aerobic exercise and that increasing exercise is needed to maintain fitness and avoid deconditioning. https://www.cdc.gov/me-cfs/treatment/index.html
 
Medfeb said:
@Robert 1973 - just an FYI in case its useful to you

CDC updated its website on May 18 and added a section on managing PEM. Some of the text is better but the statements about exercise could suggest the only problem is with vigorous aerobic exercise and that increasing exercise is needed to maintain fitness and avoid deconditioning. https://www.cdc.gov/me-cfs/treatment/index.html
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As much as I'd like to criticize my healthcare provider for their current treatment recommendation of exercise + antidepressants + supportive therapy, they really aren't in disagreement with the CDC.
  • Exercise: "Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning."
  • Antidepressants: "Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications."
  • Supportive Therapy: "Professional counseling: Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships."
Two steps forward, one step back. Progress is never easy, is it?.

I suspect the May 18, 2018 CDC content revisions we are seeing will also appear in some form in the new "Information for Healthcare Providers" scheduled for release this summer. I hope I'm wrong.

Apologies for being off topic.
 
Robert 1973 said:
I gather that the changes to the “factsheet” may have been in response to the Forward ME letter. But I will ask the CDC to clarify whether it has communicated with the SMC, as @Esther12 suggests above.

(ETA discussion on Forward ME letter to SMC here: https://www.s4me.info/threads/forward-me-group-letter-to-the-science-media-centre-april-2018.3365/)
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That the only change they made was to the CDC sentence, when the Forward ME letter referred to far more than just that, makes me think it might be the CDC instead. Who knows though. I suspect that the SMC will not be keen to be transparent on this.
 
Excellent work @Robert 1973!

I seem to recall that the SMC has ambitions of establishing itself in other countries, including the United States. If so, asserting that the CDC makes recommendations based on patient pressure rather than on medical evidence is a superb way to make friends and influence people in the Department of Health and Human Services. Keep it up SMC! :thumbup:
 
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“The CDC has removed mention of CBT and GET from its website and currently states that there is no approved treatment for CFS/ME.”
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Definitely a step in the right direction, whatever the reasons and however reluctantly they are taking it. But only a step.

Webdog said:
Exercise: "Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning."
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The first part of that statement is actually quite good. It goes against what the PACE crowd are saying about patients paying too much attention to their bodies.

But the second part raises the question: where is the evidence for deconditioning (of a pattern and level that explains physical symptoms)?

I still think that one of the most remarkable things about ME, and one of its most important (and ignored) clues, is that patients are not more deconditioned than they actually are.
 
Sean said:
Definitely a step in the right direction, whatever the reasons and however reluctantly they are taking it. But only a step.


The first part of that statement is actually quite good. It goes against what the PACE crowd are saying about patients paying too much attention to their bodies.

But the second part raises the question: where is the evidence for deconditioning (of a pattern and level that explains physical symptoms)?

I still think that one of the most remarkable things about ME, and one of its most important (and ignored) clues, is that patients are not more deconditioned than they actually are.
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Agreed.

I would think “Patients who have learned to listen to their bodies” should be, by definition, already exercising at an appropriate level.

There isn’t evidence of patients are deconditioned beyond their physical limitations.

“Rehabilitation specialists or exercise physiologists who know ME/CFS may help patients with adjusting to life with ME/CFS. ” — if the CDC believes patients have access to exercise specialists “who know ME/CFS”, they must live in another planet.
 
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