Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

#MEAction:

Full text:
https://www.meaction.net/2018/08/26...idelines/?mc_cid=20165100b3&mc_eid=926b73a95d

Link to petition:
https://my.meaction.net/petitions/d...ty-consultation-on-new-me-guidelines-from-cdc

 

From what I've read at the link it seems a worthwhile thing to sign, however I was surprised to read

In my opinion it would be a shame if #MEAction became unreserved supporters of unproven treatments, as this quote suggests that they are. The subject of the petition seems very similar to the NICE guideline review and I very much support the view that the only sensible position to take, both with the NICE review and with this guideline development, is that, at the moment, there are NO proven treatments to be recommended, other than pacing so as to keep within an individuals energy limit.

 

There were real problems with the last review done by the Pacific Northwest Evidence-based Practice Center, and I seem to remember a really poor response to criticism. I'm surprised we're only just hearing about this plan for the CDC to use them on ME/CFS again now.

I remember being irritated by this response, which seemed to try to act as if patients were frustrated with them for being too rigorous - I just skimmed through the comments submitted by Tom Kindlon and others, and to me the reviewers seemed to indicate that they just didn't know what they were doing.

"Although we cannot experience the condition as a patient would, we included patients and experts as members of our technical expert panel, and strove to attend to their areas of concern and guidance as we prepared our report. It is however, our responsibility as independent investigators to strictly report on evidence that is currently available using a pre-defined and structured systematic method."
https://effectivehealthcare.ahrq.go...chronic-fatigue_disposition-comments-2015.pdf

edit: PS - I'm grateful to the person who drew attention to this, even if the petition is less than perfect.

 

@Esther12 - I am unclear what you are referring to re [ETA] "I'm surprised we're only just hearing about this now."

 

I am very confused by this, what do they expect a petition with 300 signatures (their stated goal) to achieve?

 

@Wonko- the goal changes as the number of signers increases. One of the concerns is the very short amount of time to get this project paused/stopped. (Deadline Friday of this week!)

 

Sorry - edited to: "I'm surprised we're only just hearing about this plan for the CDC to use them on ME/CFS again now."

 

@Esther12 -As ingenious as this is, if they spent that ingenuity on genuinely helping us in an open, transparent, collaborative manner, we'd get further, faster.

 

That's something of a Catch-22 though: without supporting the currently inadequately proven treatments, there may be no interest in conducting studies to gather more conclusive evidence of their efficacy.

There are treatments used by the ME/CFS specialist doctors, but we don't know at this point exactly how effective they are, because of lack of funding and lack of interest in conducting proper trials.

 

Seems like a pretty strong signal the CDC has no intention of making meaningful change.

In fact, it would seem like they are planning for similar guidelines.

Incompetence or corruption?

 

Fixed the links in the text of my first post. This is the link to "attempting to quietly hire":
https://www.fbo.gov/index?s=opportu...225c1d117912f3cdeef88cb82fa&tab=core&_cview=0

 

But that isn't what the project that this petition refers to is about. It's "for expedited expertise and development of federal evidence-based treatment guidelinesone [sic] for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome." based on a review of the current literature. If you are in favour of allowing unevidenced treatments into this process, you would have to run the risk of all types of unevidenced treatments being accepted, such as the Lightning Process and all other types of woo, with the danger that somehow they become recommended. Lightning Process must be quite enticing to governments/insurance companies, a three day course and then we are cured is very "cost effective".

I can see nothing that supports the idea that this, in itself, will become a way of funding whatever type of treatment is deemed acceptable by #MEAction.

Far better in my opinion to try to ensure the review be done as properly as possible, for it to come to the obvious conclusion that there are NO properly evidenced treatments available, and then use that as a base to lobby for more research funding into treatments to then provide the desired evidence. As per normal, this will take far longer than we would like but that's just how governments tend to work.

 

From that link:

"...Interested persons may identify their interest and capability to respond to the requirement.

This notice of intent is not a request for competitive quotations; however, all responses received within fifteen (15) days of the issuance of this notice will be reviewed by the government. A determination by the government not to compete this proposed contract based upon responses to this notice is solely within the discretion of the government. Information received will be considered solely for the purpose of determining whether to conduct a competitive procurement...."

Theoretically, another submission may trigger a 'competitive procurement'.

@Andy makes good points that could be part of an alternative submission.

Perhaps MEAction could submit, or know of a group that could?

Doubtful another application would be successful, but it would be an opportunity to expose the weakness of the Pacific Northwest Evidence-based Practice Center and begin to undermine their expected recommendations.

Any way, just a thought.

 

There is a middle ground, and that is not to pretend that the unevidenced treatments are proven, but on the other hand, not to ignore the fact that treatments are being used by ME/CFS specialists doctors, which may have efficacy, but we don't know for sure as there has been no funding for studies. The guidelines could just state the situation as it actually is: that treatments are being used by doctors, but their efficacy has not been determined in high quality clinical trials due to the perennial lack of ME/CFS funding.

 

Very true but that isn't what #MEAction seem to be suggesting should happen - they are calling for unevidenced treatments to be included in the review. I believe I can understand their reasoning but, again, my concern is that with that call they then make it very difficult to exclude the woo treatments and, as far as I know, they could be calling for what I would consider to be woo treatments to be included.

 

Is this an 'ME Action' petition, or just a petition hosted on the ME Action site? I agree that it's less than perfectly phrased, but I think that ME Action is open to members submitting their own petitions, and I can see that there was some urgency with this one.

 

I don't see the petition as calling for unevidenced treatments to be included but rather as saying that ME specialists have acknowledged (in the IACFSME and pediatric primers) that treatments (symptom treatments) in ME are based on decades of clinical experience. And that this clinical experience must be included in treatment guidelines because the lack of evidence is due to persistent lack of sufficient funding for appropriate science/biomarkers/trials to produce published evidence.

 

The webpage says it is an MEAction Campaign and from what I understand it is an MEAction petition.

 

This is what MEAction say:

So they are highlighting the fact that there are treatments which ME/CFS doctors use, but due to lack of funding, proper trials of these treatments have not been conducted, and thus a review of the medical literature would not really capture how ME/CFS is currently treated.

I agree that the report should not say "antiviral X works very well for ME/CFS, and it a recommended treatment", as we don't really have the evidence base. But on the other hand, the report should not just review the published medical literature and conclude that there are no treatments either.

 

I'm not comfortable with the 'are known' if we don't have any good evidence to support what is claimed to be known.