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Want to stop GET from being prescribed for ME/CFS? Don't bother writing to the NIH or CDC. They are both fond of saying "we are not enforcement agencies." Talking to federal agencies is like talking to a brick wall. The NIH will tell you to file a complaint with the American Medical Association...

https://doi.org/10.1371/journal.ppat.1006991 There is also a separate thread on a news article covering related research: Note that the news article says "Chronic Fatigue Syndrome", while the actual paper says "chronic fatigue".

If probiotics widely worked, we'd all be cured.

The article mentions: Martin, L. et al. (2018): Cross-sectional analysis of CD8 T cell immunity to human herpesvirus 6B. PLOS Pathogens, DOI: 10.1371/journal.ppat.1006991 Edit: I'll post the actual paper in the research section. Edit: Noticed the news article says "Chronic Fatigue Syndrome"...

I saw in another report that there are also currently 29 new Multiple Sclerosis drugs being developed. Edit: This is the correct link https://www.forbes.com/sites/robinseatonjefferson/2018/04/27/report-offers-hope-outlines-537-new-drugs-in-development-for-neurological-disorders/2/#2de172346f28

News article about HHV-6 research, with a reference made to Chronic Fatigue Syndrome. https://www.eurekalert.org/pub_releases/2018-04/hzm--hrg042718.php

I strive for mediocrity.

Note that MS has 17 FDA approved medicines. ME/CFS has zero. But treatments will happen for us too eventually.

https://www.everydayhealth.com/multiple-sclerosis/treatment/new-guidelines-ms-treatment-start-treatment-early/

I think sometimes ME/CFS is partially an environmental illness. But no, I don’t think ME/CFS is primarily an environmental illness.

Roughly 100 million Americans belong to a managed health care plan. Their doctors typically don’t have the time or knowledge to diagnose a complex systemic disease like ME/CFS. If diagnosed, exercise+therapy+antidepressants is standard treatment. Access to an ME/CFS specialist is virtually...

Patients just need a bit of “shopping therapy” to help improve their mood? Lift a grocery bag to overcome a fear of exercise? Cognitive and behavioral “treatments” on a budget.

“Caution against over-aggressive use of exercise programs.” I feel this needs more caution. A lot more caution. “There are a variety of treatments available.” What are they? How about mentioning one? In the past, it has been common for patients to insist there was something physically wrong...

I don't know. I haven't specifically sent that information to Healthwise, other than to say that AHRQ no longer recommends GET/CBT in clinical practice.

I had some energy today, so I also sent this info to the California Department of Public Health, asking them to make a similar public statement about GET/CBT for ME/CFS. Feel free to do the same in your state. Make some noise. Show some unrest. :)

Sent the relevant GET/CBT info to Healthwise. They acknowledged and say it will be forwarded to their ME/CFS content experts. Healthwise previously agreed to remove their GET/CBT content, but they are still undecided about harms.

Thanks for letting us know, @John Mac. There are too few authoritative sources pointing out the harms from GET.

EBV, T-cells, autoimmunity, and genetics. I'm convinced it's all connected. How else to explain the type 1 diabetes, T-cell lymphoma, ME/CFS and Alzheimer's in my family?

The response from Healthwise is that they don't know yet if they will follow the recommendations of the Clinician Summit (stating GET/CBT as inappropriate and potentially harmful). They are continuing to evaluate GET/CBT. Healthwise's medical team and medical reviewers will be attending an...

Scientists have speculated since the 1960s that life could exist in the clouds of Venus, despite the surface being inhospitable. There is even some observational evidence to support the idea. https://www.universetoday.com/138935/could-there-be-life-in-the-cloudtops-of-venus/ Microbes might...