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If I recall correctly, ME Respite was created by a former nurse who has severe ME. There is a Board of Trustees and they have an office in Auckland and volunteers. I signed up a few years ago to do mentoring but then became too unwell to do this. They also have a craft group where you can make...

Considering the treatment of pwME for many decades was mostly within psychiatry, some pwME would have been admitted to mental health units and some of those may have been given ECT as they had a severe depression diagnosis. I don't know the numbers. One would think if ECT had been a successful...

Reading the translation of the whole article it does give quite a different picture - She requested ECT as she had a similar depressive episode that responded to ECT which also resolved her severe fatigue that was diagnosed as ME/CFS. She only had ECT due to her depression not because of ME/CFS.

Visible is not available in NZ. I monitor HRV with the app Welltory (or through the Apple Health App) for a couple of years. Initially it was to make sense of my OI and OH and being stuck in PEM for the longest period so far but in the end it was more useful for stress management when needed as...

@bobbler. In answer to your questions: Psychiatry doesn't research the aetiology of Dementia, Parkinson's etc, researchers do this. Psychiatry may do treatment trials for meds. We don't have much to do with the treatment of Parkinson's Disease - that is still in the specialty of medicine...

Yes, @bobbler, to train in psychiatry you are not taught much on the methodology of psychological research compared to a clinical psychologist or perhaps a postgraduate of a bachelor of psychology would. But we are taught some of it. Of course psychiatry still has psychosomatic theories taught...

:laugh:, yes I agree, I am having a wee chuckle that PG found no evidence for the use of brain reprogramming programs in his recent review of the treatments for long covid and here there is a module for "active reprogramming".... To a degree, CBT is a form of reprogramming so what makes them...

Google translation from Norwegian to English of the information provided to participants in the Mind-Body Reprocessing Therapy of the study shared in a Norwegian Facebook group...

@bobbler The digit span test is just one of many cognitive tests in a neuropsychological examination. The tester has to have some training in giving the test but after that it is simple to perform. Remembering the given numbers forward tests short term memory, and backwards, working memory...

Moved posts Thanks @Midnattsol, we didn't HAVE a thread on this particular study. So it is "Mind-Body Reprocessing Therapy" which they say is a mental intervention, 4-6 sessions with a therapist and digital resources. They assess psychosocial factors and is basically is a CBT like therapy...

Research being done at the University of Oslo with the support of COFFI and the Oslo Fatigue Consortium MINIRICO - Mental intervention and nicotineamide riboside supplementation in Long COVID Long COVID, also referred to as post-acute sequela of COVID-19 (PASC), is present in a substantial...

Incidentally, I was listening to Skeptics with a K (podcast for the Merseyside Sceptics Society) recently, and almost fell off my chair, when they said Professor Paul Garner had talked at one of Toby Young's events about science. I didn't know much about Toby Young or the paper The Spectator...

That Sciencebit piece by Professor Brian Hughes covers the shenanigans of this paper by Garner et al, very well. He notes a seemingly thorough review of the evidence to do with medications, supplements etc and a discussion on risk of bias etc but inexplicably, they do not do the same thorough...

Good score thanks! yes, that has been discussed on S4ME https://www.s4me.info/threads/endothelial-dysfunction-and-altered-endothelial-biomarkers-in-patients-with-post-covid-19-syndrome-and-me-cfs-haffke-scheibenbogen-et-al-2022.25093/

Have yet to find this study on S4ME The referenced article https://www.mdpi.com/2075-1729/11/9/986, discusses endothelial-1 but makes no mention of ME/CFS or having done a study! That is curious. edited to add info

Anurag Adhikari, Janesha Maddumage, Emily M Eriksson, Sarah J Annesley, Victoria A Lawson, Vanessa L Bryant and Stephanie Gras Med J Aust 2024; 221 (9): S40-S48. || doi: 10.5694/mja2.52456 Published online: 4 November 2024...

Being one of the few psycholophiles in the forum;), that is a bit of a mouthful that word! :laugh: Most of what I read was reasonable considering the nature of the article. There will be a some people with LC that have developed mental health problems from having such a disabling illness, who...

Had a read, there is no mention of covid-related microclots or covid-induced thrombus causing the strokes they performed thrombectomies on. Being really overly picky - there is some unusual language in this research paper. Of course, researchers can write with whatever words they like but it...

It sounds like you suspect a gastrointestinal problem so a visit to your doctor to assess your dietary intake versus energy expenditure and look for any pathology is a good idea. I do wonder about the potential lack of calories in your diet - it sounds like it is lacking in carbohydrates. It...

I really appreciate you writing this Johnathan. I think you are the voice of reason currently in the ME world. Everyone gets so caught up in their line or research, their theory, their hope this will be the cure etc and don't step back and go, what can we do to help pwME now? Who is monitoring...