News from Aotearoa/New Zealand and the Pacific Islands

Recording: A Neuroinflammatory Model for ME/CFS (a hypothesis) - Dr Angus Mackay

https://www.youtube.com/watch?v=E2DlrObjSRY

Angus is keen to hear from people about whether this model resonates with them. Does it align with your experience of ME/CFS? He invites you to email him to discuss: angus1mackay@hotmail.com

 

ANZMES comments on NICE and releases Best Practice Guidance, see

https://www.s4me.info/threads/new-zealand-anzmes.15144/page-3#post-521286

https://www.s4me.info/threads/new-zealand-anzmes.15144/page-3#post-521287

 

Long Covid webinar. Hosted by the Helen Clark foundation (former NZ prime minister). Good speakers
Doesn't say if it will be available for later viewing but previous webinars have appeared on Youtube afterwards

https://helenclark.foundation/event/webinar-long-covid/

 

"Some people with Chronic Fatigue Syndrome say they are being denied personal insurance because insurers deem it to be a mental health issue, not a biomedical issue."

What dualist thinking.

 

Generally very good. However... Warren Tate again promoted brain retraining as (paraphrasing from memory): "something that some patients report helps with incremental improvements over time". This was pushed back strongly by co-panellist Jenene Crossan following opportunity from an audience question on how to prevent GPs from recommending/"prescribing" the LP. The audience member described their daughter having pushed through (ME) via the LP which led to a devastating deterioration to very severe and fully dependent for the last five years — yet not classed as disabled...

Also in open chat, the comment was made that (paraphrasing from memory) "many Australian patients are being diagnosed with FND and being referred for psychological counselling, ignoring POTS/dysautonomia, endothelial dysfunction etc"

Also in open Q&A, from the only person listed as "Anonymous attendee" and referring to the recent PHCC LC Briefing —

"I was sursprised that the report the other day did not report two papers on interventions that have shown some benefit e.g. Kutt [sic] 2023 on CBT (where patients with depression were removed so not working on depression0 [sic] and Pouliopoulu [sic] 2023 in Jama network on rehabilitation. The absence makes it seem very therapeutically nihilistic. As warren says there is a disregulared [sic] sympathetic nervious [sic] system that needs calming."

I would happily wager $50 that that was Arroll.

 

https://www.youtube.com/watch?v=9meA0U6tTEo

 

Ministry of Health statement (2/4/24) Clarification: Long COVID Expert Group completed its work in 2022

 

I chanced upon this paper today and thought it could be of interest in the wider forum but did not know how to pitch or tag it. I will leave it to my fellow Kiwis to decide if it deserves a greater profile. If anyone knows Dr Mark Bolland, perhaps they can send him the background papers on debunking the Pace trial. https://www.tandfonline.com/doi/full/10.1080/03036758.2024.2325004

 

Thanks @Deanne NZ. Absolutely that deserves a pitch!

I've posted it in this thread: Publication integrity: what is it, why does it matter, how it is safeguarded and how could we do better?

I will have a chat to Mark.

 

Briefly — is aware of the PACE trial, but doesn't think there is anything he/their team could add at this time. He noted The Lancet has refused to retract proven fraudulent studies and not likely to change their stance on PACE.

I think some here might have commented previously that 13 years later it's probably better to leave it unretracted anyway: a bit of a millstone that's only going to get heavier with time.

I will also forward our Cochrane documentation separately.

 

Dr Anna Brooks has been invited to speak in May's UniteToFight LC, ME/CFS conference.

Thursday, 16th 9:00am – 9:30am
New Zealand's Long Covid Landscape - from recognition to biomedical research - an overview

 

The Press: Long Covid: ‘I don’t want to be stuck in this house anymore’