I find that an odd statement @petrichor. Everyone has ideologies, and some are more useful than others. Some are worth holding onto and some are changed by what we learn. An ideology that 'sound scientific enquiry helps to understand if treatments work' is a useful ideology for this review...
Just to add, Ron closes this November update with
"So, I'm kind of excited about this. This is a possibility. But again, all we're trying to do is to say the metabolic trap is not right so we can move on. but so far we have failed to do that. And so we are continuing to pursue it. For those...
Ron says that the work on this hypothesis started when it was found that all of the people on their severe ME/CFS study had a mutation in the IDO2 mutation, and they found the same problem in a large number of other patients. He goes on to say
'Now, many people have found that there are people...
There's this open access paper that seems to be about the set-up of the study:
Cohort description: The Danish study of Functional Disorders, 2017, Dantoft et al
Abstract: The Danish study of Functional Disorders (DanFunD) cohort was initiated to outline the epidemiology of functional somatic...
Also at the link is a terrific response about the application of GRADE by NICE in the ME/CFS Guideline by @Michiel Tack (dated March 2021). If I'd read it before, I'd forgotten it. Definitely worth a read.
The forum thread on that recent study is here:
Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS - Pereira, Bateman et al, 2021
It's disappointing that everyone has fought so hard to try to remove unevidenced ME/CFS treatments only to have the MEA actively promoting another one. The evidence for TENS is extremely weak. Why would Dr Shepherd allow this?
e.g. Pain Science
But we have Dr Peter Gladwell in this...
I've submitted a complaint using the website's facility, noting the requirements set out in the NICE ME/CFS Guideline about any recommendations of exercise for people with ME/CFS.
Treatment
They suggest that if something similar to what happens in diabetes in terms of neuropathy/vascular issues is happening, then the drugs developed for helping the problem in diabetes might help.
For example:
I'm getting tired, so will have to stop reading. But I'd be interested to...
Re anosmia (loss of the sense of smell)
More on the microvascular hypothesis:
I thought this was interesting about a link between nerve damage and 'vein wall signalling' in MS. (I'm not sure what vein wall signalling is actually doing though.)
I wondered that @Trish, but we've come across Bruce Patterson before. His solution to Long Covid does not involve apheresis e.g.
USA: InCellDx Dr Patterson - New lab service offering cytokine tests to Covid longhaulers
Discussion of a treatment to filter microclots from the blood (apheresis) has been split off to a new thread:
Aphaeresis/ Apheresis (for removal of microclots)
I've had good feedback about @Michiel Tack's and Evelin's recent article about the PACE trial and more when I've given it to people for this purpose.
https://mecfsskeptic.com/a-historic-change-for-the-me-cfs-community/
From BPS attempts at psychologizing Long Covid @Art Vandelay
I agree that quote is a bit worrying, and doesn't really fit well with Avi Nath saying that they found immunological abnormalities in the small sample of ME/CFS patients looked at in the intramural study. Dr Michael Sneller is not...
There appears to be some 'reimbursement for time':
The blog that is linked on the information page actually comes across really well. Note that this is BMJ Health and Care Informatics. So, a fairly specific journal.
It's worth getting copies of letters from specialists and GP records. Some practices now have records that can be viewed by patients - which seems to be a very good move towards transparency, and allows for errors to be fixed.
It is amazing to me how wrong medical records can be, and so often...
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