Kira Curious

similarly, I know you asked about pre-2012, but van Elzakker published his framework hypothesis (HHV infecting the brainstem) in 2013. I'm sure if you look into his footnotes you'll find something.
pubmed.ncbi.nlm.nih.gov/23790471/

though my notes suggest I liked this one better

sci-hub.se/https://doi....

ooo forgot about this one

sci-hub.se/https://jour...

Metabolic features of chronic fatigue syndrome | PNAS More than 2 million people in the United States have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We performed targeted, broad-spec...

also this one requires more digging....Here's Naviaux's original paper on the dauer hypothesis. he's got many references. I would suggest checking them.

www.pnas.org/doi/10.1073/...

100%!!!!

4/4 "To enable people with ME/CFS and their clinical teams to identify and better understand patients’ needs as part of the clinical assessment process."

3/4 "... For example, few services have dietetic input so the ability to address nutritional needs are limited.”

2/4: “ME/CFS specialist services are known to be sparse in Great Britain and many areas have no provision at all. Existing services are also very varied in terms of their remit and scope, staffing levels and skill mix and may not be resourced to address all the needs identified in the CNAME."

From the preprint (1/4):
“Establishing patients’ needs is a precursor to discussion and joint-decision-making to identify patients’ goals and priorities, and to prepare a care and support plan. …operationalised into a format that could inform clinical care.”

oh lordy yes. Ppl do it all the time where needs are not met.
I think this is intended to be a first step.

I had only read the abstract as I don't have brain today, but now I see you're right about that :) post-dx, with their dedicated clinical team. I would still hope it would systematise and improve attention to what patients need, by making sure one checks every box.

<-- pharma market researcher, so I have a slightly different POV
NICE cannot recommend off label. In a few years, maybe some things can be added to their improved guidance. I just thank the universe that the new guidance is not all Wessely all the time.

right :) my original post was that this is useful for doctors who don't know ME/CFS because it gives them a framework by telling them where to look...which is better than nothing in a world where we don't understand the disease and don't have reliable treatments.

*Eckey sorry

Actually, led by the ME Association....

I just think that if I were a person who was struggling with my health and didn't have a diagnosis, I'd rather a treater have the checklist than the Eckley article.

there ISN'T info on treatments yet. Nothing is approved. They can only recommend things that are approved, because that's how Western medicine, institutional reliability & legal liability work.

Yeah :'( had you seen the old one? man, it was BAD. But this one wouldn't have prevented Ms. O'Niell's death either. It's just closer than it was.

This is from Eckey right? I would respectfully ask that we take a slightly different look at the utility of this article. I don't believe someone outside the ME community is going to look at all that yellow & say "hey we have things that work."

Also the NICE update was pretty informative.

www.nice.org.uk/guidance/ng206

... have a real answer to the "all in your head" model, and very easy to throw up yr hands & say "maybe you just have anxiety". I personally think providing a care checklist implies an algorithm, but even if it doesn't, it does provide a concrete set of things to treat. (tx 4 the DE algo BTW)
2/2

1/2 there are literally 49 different pathophysiological explanations being researched! We don't understand energy limiting conditions yet at all. So it's hard for treaters NOT steeped in the science or familiar with patients to ...

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

see also this very nice explainer
youtu.be/RiwX9Y0NbiQ

Jacob Teitelbaum was an early proponent of biological explanations. I don't know if he ever explicitly spoke out against GET though.

www.vitality101.com/shine

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

This article discusses it from the other side (how GET got such traction):
www.theguardian.com/commentisfre...

Chronic Fatigue Syndrome A literature search identified all papers published on chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) in the British Medical Journal between 1995 and 2000. Analysis of the findin...

Article on publication bias that argues against the GET position

www.tandfonline.com/doi/abs/10.1...

The Clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome : Free Download, Borrow, and Streaming : Internet Archive xxiii, 724 pages : 29 cm

I was just going to post this

archive.org/details/clin...

I distributed all 150 copies of Megan's "How to Report ICE Philly edition" at Philly Zine Fest yesterday and at least 5 people returned to ask me if it was OK for them to print their own copies to distribute. I responded with an enthusiastic YES - that's the point and I hope everyone does so.

it's an easy way of blaming the patient so you can dismiss them. Ready made by American prejudice!

...and understanding the disease likely will require us to look at biological systems in a different way. (who was it who famously said, when asked how many systems there are in the body, "One."?)

This tool at least provides a framework & a backwards way of educating treaters.

2/2

The algorithms HCPs develop & use to treat pts usually emerge from an interaction between deep knowledge of the human body & the specific input of the individual pt. There's NO deep knowledge for ME/CFS....
1/2