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I'm not sure "activity management" implies GET here, there's no mention of graded activity or exercise. This is what the paper suggests: It would be counter-intuitive to offer GET while recommending to stay within the energy envelope, since GET consistently pushes one to exceed their energy...

I haven't checked but the paper was accepted on July 30, a week before @Esther12 created this thread. The original PDF file on the KCL website is also named "pdf_proof_re_submit.pdf" so this may indicate it was the final version...

Citing the relevant editorial change: Will this change really help mitigate scientific misconduct? I doubt these measures are strong enough. 1. For academic-commercial partnerships, the change doesn't explicitly require that the academic author who has access to, and verifies, the data, is...

This honestly is an excellent account of the multiple facets of PEM, especially with regards to the diversity of its symptoms. That is, each of the overarching "big three" (exhaustion, cognitive difficulties, neuromuscular complaints) can be expressed through similar but slightly different...

It seems times might be changing, oddly enough!

I would be more cautious on this link. Confounding symptoms between long Covid and ME Aside from the (possibly long-term) pathologies induced by SARS-CoV-2 that can reduce tolerance to exertion and cause fatigue, such as heart, lung and neurological damage, some long-haulers don’t seem to...

Thank you for your explanation! In the case of this study, the lead author Marco Castori is a member of the medical & scientific board of the Ehlers-Danlos Society and he has published extensively on joint hypermobility and hEDS. So it seems likely that there is an important risk of referral...

I'm confused: do you mean that it is likely these patients presented with fatigue then were diagnosed with EDS-HT/JHS? I agree the risk of referral bias is important if patients at a ME/CFS clinic are screened for hypermobility, but isn't it more likely that patients at an EDS clinic (as in...

I'm not sure what this tells us, especially with the direction of the association. The authors screened for CFS in EDS-HT/JHS, but they conclude EDS-HT/JHS should be screened for in CFS.

Castori M, Celletti C, Camerota F, Grammatico P. Chronic fatigue syndrome is commonly diagnosed in patients with Ehlers-Danlos syndrome hypermobility type/joint hypermobility syndrome. Clin Exp Rheumatol. 2011;29(3):597-598. https://www.clinexprheumatol.org/article.asp?a=4635 No abstract, this...

Now published, thanks to @Grigor for noticing it. https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/full

A very rigorous systematic review from French researchers on the use of HCQ and HCQ+AZT for the treatment of COVID19. https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(20)30505-X/fulltext "Hydroxychloroquine was not significantly associated with mortality: pooled Relative...

While this is the purpose of Jonathan Edwards’ request, research is not — and should not be — the primary concern here. The primary issue is the safety of patients who may be harmed from spinal surgery, a high-risk treatment with no evidence of acceptable safety or efficacy for ME (symptoms)...

Re-read too with less brain fog and yes, the wording of your request is clear: There are in fact multiple issues at play: 1. Unproven claims of etiological links between ME/CFS and spinal problems 2. Unproven claims on the safety and efficacy of invasive surgery as a treatment for ME/CFS (3...

@Jonathan Edwards: in a similar vein as @strategist's question, could you please clarify your request? Specifically, which of these points would you like the cited MDs to warn against: 1. the risk of harm over invasive spinal surgery 2. the hypothetical links between ME/CFS and brainstem...

Thank you. Dr VanElzakker specifically addresses structural issues and CCI from 43:08 to 48:26 here: He acknowledges -- with no caveat about either the N=1 or invasive surgery, unlike at the IIME conference -- that issues with the brainstem can cause ME symptoms. Though interestingly, he views...

Oops, did he? Could you please link to a resource where he mentions his new position? I haven't been following his work closely. EDIT: I found @Dx Revision Watch's post about a few of Dr VanElzakker's tweets this February and the subsequent discussion in the other thread on CCI/AAI. In these...

Drs Nancy Klimas and Michael VanElzakker's positions, from the Invest in ME Research 2019 conference (starts from the question about Jen Brea's remission from decompressive surgery at 2:00): Bolding mine:

Other than fact that this is a non-controlled study with subjective outcomes, 206 patients (49.16%) dropped out of the program within the first 6 months. And only 181 (43%) completed the full 12 months. Here's the authors' justification for the dropout rate (bolding mine): In other words: the...

Rethorn ZD, Pettitt RW, Dykstra E, Pettitt CD (2020) Health and wellness coaching positively impacts individuals with chronic pain and pain-related interference. PLOS ONE 15(7): e0236734. https://doi.org/10.1371/journal.pone.0236734 Abstract: