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@InitialConditions - this is the draft of the systematic evidence review. CDC told CFSAC that performing the evidence review is a necessary first but separate step to developing clinical practice guidelines. As I understand it, the product of this current effort will be just the final systematic...

Yes, non-US organizations can submit comments and evidence.

The draft systematic evidence review has been released and can be downloaded from this page - https://www.regulations.gov/document/CDC-2021-0053-0001 There are two files for download but they appear to be the same file. The deadline for comments is Due Aug 16, 2021. Details on how to submit...

@Andy - thanks for catching that and linking it in

The PROMIS Fatigue instrument (PROMIS Short Form v1.0 - Fatigue 7a) has been evaluated in CDC's ME/CFS multi-site study and reported in this 2019 Yang paper. I understand it's being advanced in FDA qualification studies as an outcome measure for ME but don't know the status of those studies...

Previous thread on this was here - https://www.s4me.info/threads/cdc-treatment-evidence-review.10243/ This is an updated treatment evidence review commissioned by CDC in 2019 using the Oregon group that did the 2014/2016 evidence review of treatments. I can confirm but believe that it's open...

No funding, underpowered trials, lack of clinicians and academic centers to participate in such trials are just a few of the issues that make it difficult to do such trials. Rowe, Speight and a number of others produced the 2017 pediatric primer which has guidance based on their clinical...

At the 2013 FDA meeting on drug development for ME, Peter Rowe acknowledged the results of that trial and asked whether he should believe that trial or his "lyin eyes" when he saw the positive impact it was having on his patients. Its certainly has had a significant positive impact on the cases...

These are more detailed recommendations for specific tests and treatments that can be used in conjunction with the general guidance on the basics of diagnosis and management provided in the coalition handout that started this thread.

@InitialConditions - thank you for posting. Matthew is my son. I'm biased of course but I think this piece is remarkable for its quality of writing and also for its deeply personal story of coming to grips. As much as I might think I understand the impact ME has had on his life, I continue to learn

The US sociopolitical issues with masks and vaccines is unquestionably a mess but this is not about that. It's about how the medical community has been responding to post-infective illness for decades. I had a post-infectious set of symptoms in 1975 that landed me in the hospital and was told...

Just a heads up - During the CDC-NIH Interagency meeting today, CDC said that they will be releasing the draft of their systematic review of treatments shortly - the federal register notice is being prepared now. No link yet

From what I can tell, prior to 1988, the few investigations that CDC and NIH did focused on a series of outbreaks, which they seemed to view as biomedical, not psychological. But then, in the mid to late 1980s, CDC butchered the investigation of the outbreaks and NIH's Strauss published...

Yes, you are right they listed NICE in the optional PEM group. I assume they did that because while the 2007 NICE guidelines said post-exertional malaise and/or fatigue, it also said that the post-exertion exacerbation of symptoms is optional. So they seem to have defined PEM in a non-standard...

IMO, broad inclusion criteria that have no clinical rationale for creating the class beyond "medically unexplained chronic fatigue" go beyond what could possibly be justified on a scientific basis.

I agree that inclusion criteria need to make sense in terms of the treatment strategies. I appreciate that a broad strategy across diagnoses might be useful in the case of pain. But even there, wouldn't you need to at least stratify by the type of pain if different medications have differential...

So does this mean it would be appropriate to select a cohort based strictly on the basis of shortness of breath to test an asthma treatment and then apply the findings to patients with heart failure and COPD? Perhaps not exactly the right clinical analogy but my point is that inclusion criteria...

I think we'll just have to agree to disagree Its difficult for me to imagine that it would be scientifically legitimate to cast the research net so wide that it would ignore whether the key feature of the disease is present or not - particularly when that feature would actually predict harm...

I agree that use of bad methodology like unblinded studies with subjective outcomes is a genuine scientific problem. But selecting the wrong patient population is also a genuine scientific problem. Making claims of efficacy and safety for a patient population based on studies that included...

I don't think it's quite that simple. I am very close to a longhauler whose most challenging symptoms are POTs and brain fog. But it's not clear that she experiences PEM. For instance, on most days she cannot be upright for long but on some days she has walked a half mile or a mile and did not...