News from Aotearoa/New Zealand and the Pacific Islands

Covid 19 Delta outbreak: Concern long Covid will soon burden health system

https://www.nzherald.co.nz/nz/covid...den-health-system/2MZREX7IQWZN7CAWELHDZU5O74/

 

I am interested to know @hibiscuswahine what has helped you from your 'training in the bio-psycho-socio-cultural-spiritual model of health'?

Could we say that the best advice for ME/CFS seems to be resting, pacing, acceptance, and living as well as possible with regards to friends, food, and interests.

Yes, I agree about the great dilemma of support groups. It is powerful to be amongst others that can acknowledge and understand your experience. But problematic for people when one thing appears to help someone else, but not others - and who knows if a particular supplement or practice will help a particular individual. Some groups can be quite chill for a period - but all it takes to disturb that is a couple of individuals that are keen to problem solve themselves out of being ill to bring a tension - and who can blame them.

 

Yes, that sums it up. Living well is not material but does require the basics for good physical health - shelter, food, routines and pleasurable activity. Next the social network - validation, acceptance, systems of meaning and shared experiences. Then there is the psychological consequences of having an unpredictable body (we did not choose this but have to learn how to adapt - pace, rest, while working out how to meet our own personal needs and our support network, working through the externalised and internalised stigma (from socio-cultural factors, including the medical profession but not limited to them), learning acceptance and compassion, within ourselves and for others.

I have been fortunate that having worked in mental health in NZ that there was fairly rapid ideological change within psychiatry which was not apparent in my medical training which was often very paternalistic and privileged. Some of that hasn’t changed but I was trained in a person centred manner with respect for people’s culture, spirituality and health practices. Also I see mental health disorders as being no different to physical disorders, all have a biological basis, but the stigma from society is heavy and society is not inclusive. Things are changing by raising awareness and gradual acceptance that mental health problems are normal and most people will have some sort of mental health difficulty in their lifetime, the degree of that difficulty depends on biological vulnerabilities and circumstances outside their control.

For me personally - breathing, grounding, relaxation skills and self-soothing. Mindfulness is useful but often too cognitively fatigued to use it (mind wanders of, get tired of doing it, would rather sleep) but the non-judgemental observation, describing and radical acceptance approach has helped smooth things out when I am struggling with coping with my illness.

 

In-depth article from Michael Hall, Radio New Zealand, Health section (3735 words, 20 minutes to read?)
https://www.rnz.co.nz/news/what-you...-covid-a-new-type-of-chronic-fatigue-syndrome

"Is Long Covid a new type of chronic fatigue syndrome?
Health organisations across the world are rushing to prepare for a wave of debilitating post-Covid-19 illness that we know little about."

Covers

• The nature of ME/CFS
  
• (Warren Tate's) Research history
• Long Covid study
• Biomarker for Long Covid
• Post-viral illness now in spotlight
• ME/CFS support groups there for Long Covid sufferers
• Huge burden on health system

 

Prepare. Pre, meaning: before. Nope, not it. 2 years into this is definitely not before, it's far after.

 

What struck me about this article is govt spokespeople did not talk to the woeful and continued lack of funding into ME/CFS research, including that they have never funded scientific study into the prevalence and incidence of ME/CFS in NZ using stringent criteria. They rely on universities to do this work but sadly most have been funded by pwME, carers and families and has never been picked up. Major advances have been made for cancer, autoimmune disease etc but still not being applied to us. Massey University’s exercise physiology department are doing important work on trying to understand PEM via CPET.

All I read is it ME may effect 20,000 people in NZ but 90% may not have been diagnosed. Stats like it is 6 times more common than MS but no research into the level of disability and the progression. It is still not recognised as a disability even though the quality of life is worse than other chronic diseases. Research can leverage political change and resourcing.

It is good to hear about Dr Brook’s research but is still very much in it’s infancy and the longitudinal research mentioned below will take years.

“It's hoped that the ME/CFS community will be part of, and benefit from, that research," Tate says.

A Department of Health spokesperson says it has commissioned a major piece of longitudinal research of people that had contracted Covid-19 in Aotearoa.

"Te Herenga Waka-Victoria University of Wellington has been awarded the contract for this research and is currently in the final stages of preparation, with participant recruitment likely to start soon."

The Ministry statement adds: "The study will look at the impacts of Covid-19 over time, with a specific focus on the health and wellbeing of Māori, Pasifika, those living with a disability, and those who were infected through their workplaces. The experiences of those with Long Covid will also be included.

"We have also issued rehabilitation guidance for acute Covid-19 and are looking to update this to take into account Long Covid. We have completed a comprehensive literature review on the topic and are aiming to engage an expert advisory group to translate this into guidance."

I have read through the Covid rehabilitation guidelines for NZ.
https://www.health.govt.nz/publicat...e-or-recovering-covid-19-aotearoa-new-zealand

Auckland Regional Health Authority (3DHB) has released theirs. It is very good based on the latest CDC and NICE guidelines for the treatment of ME/CFS, including specific information about PEM and using the Borg rating scale for perceived fatigue to guide whether one is well enough to try to challenge oneself outside an established energy envelope but there is no reference that some people may get a ME/CFS diagnosis and what will happen then. (Unfortunately I can’t get a link for this, but this booklet was released to the ME Auckland ME/CFS FB support group)

 

Prof. Warren Tate and Dr. Anna Brooks discuss Long COVID and ME studies on Radio New Zealand's Nine to Noon.

RNZ link

 

Summary of the RNZ interview

Dr Brooks- a cellular immunologist, University of Auckland is looking at T and B cells of people who think their recent onset of ME/CFS is due to covid but have not had a confirmed PCR test. Has pre and post covid samples and pre and post vaccinated samples. She has been able to identify the changes due to covid infection not related to the spike protein but to other parts of the covid virus to help people get their long covid diagnosis validated. Continues to recruit people and will run for a few years.

Emeritus Prof Tate, University of Otago/Brain Research Trust, Dunedin is doing a pilot study looking at pwLC, pwME and healthy controls. Has data from first principal component analysis showing unique molecular signatures for pwLC compared to healthy controls with overlap with PwLC and pwME. Some overlap with pwME and healthy controls probably due to length of illness compared to newer illness in pwLC.

The molecular signatures shared with pwLC and pwME show activation of immune cells and up-regulation of proteins associated with energy production factories (mitochondria), indicating mitochondria are under stress and not responding to these proteins like healthy controls

Unique to long covid is also an up-regulation of a critical protein of an inflammatory pathway (not named) which was not found in the ME group. Further analysis will occur by April 2022.

He also mentioned microclots is likely to also be affecting energy production unique to LC not ME, due a special part of the spike protein that clotting factors bind to.

A masters student there is also recruiting 100 pwLC and 100 pwME to do genetic testing following personal and family history taking.

Also mentioned the ongoing concerns of adverse events with vaccination in ME/CFS, 1 in 4 on the ANZMES survey.

 

He didn't really say but I was wondering if this sort of finding is simply the result of people with long covid being more recently ill. Longstanding ME may not be the best comparison group if you're trying to work out if the two conditions are the same. There's been at least one study - cytokines I think - where findings for short and long duration pwME differed quite a bit. Admittedly it wouldn't be easy to find a whole cohort of recent ME diagnoses in Dunedin.

He seems to have nuanced his approach. Last time I heard him it was about asking for vaccine exemptions. This time he talked about needing to find out how to vaccinate pwME safely (no solution given, before anybody gets their hopes up). I guess with Omicron looming it's looking less feasible for pwME to escape infection even if people around them are vaccinated.

 

Yes, just because there is a particular pathway activated doesn't mean it is pathological either, it can simply be a residual effect of the acute infection.

 

I do wish someone had researched this. If a significant percentage of people really are having adverse reactions, and a few (myself included) had unmistakably beneficial responses, doesn't that say something about the immune systems of people with ME?

 

Just sharing this item on TV1 from over a week ago in this thread for easy reference (it was previously shared on another thread).
Interview with Prof Tate, University of Otago, and statement from Fiona Charlton, ANZMES. Erica Stephens also shares her experience with an adverse reaction to the Pfizer vaccination.

https://www.1news.co.nz/2021/12/07/calls-for-vaccine-exemptions-for-chronic-fatigue-sufferers/

Vaccine exemption call for chronic fatigue syndrome sufferers
By Thomas Mead, 1News Reporter
Tue, Dec 7 Source: 1News
People with a rare immune disorder known as chronic fatigue syndrome (CFS) are calling on the Government for “leniency” around their Covid-19 vaccination, saying some patients have experienced adverse effects after the jab.

 

There's a fairly old Hornig & Lipkin study which suggested changes in cytokines with duration of illness and Ron Davis presented some data (Montoya study?) at an OMF symposium. However, I think @Jonathan Edwards may not be convinced that the cytokine data really indicates much - I think I can see the argument i.e. the levels [people with ME/CFS vs controls] didn't look that different.

 

TW- Suicidal ideation. Stuff Article with video of Wellington woman with major deterioration of ME with first Pfizer and too unwell to get second so facing discrimination as unable to get vaccine pass. Previous vaccine injured man with ME unwilling to take Pfizer vaccine and problems for both getting vaccine exemptions and specialist sign off due to strict criteria. Comment by Immune Advisory Centre Medical Advisor

https://www.stuff.co.nz/national/he...gJMtNao5Enw0_mQT19HHqIIfiY3rnw2NxmdoUo18X52Uw

 

Any thoughts on this protection /recovery protocol from https://www.wanakahealthbridge.co.nz/

 

Just took a look at the “Covid-19 data visualisations: NZ in numbers” page of RNZ. “Active Covid-19 cases” graph. There is a huge drop in cases for the last two data points (days).
The note at the bottom says “On 16 December the Ministry of Health changed its reporting of active case to cases infected in the past 21 days.”
NB I understand why they might do so (after 21 days active you’re probably not out contributing to spread).

This seems to indicate that 2/3rds of the large number of cases still reported on the 15th are people who have not recovered after at least 21 days. Long covid? Beginning of ME/CFS? Protracted recovery from severe acute illness? Huge sympathies to those people, and what they’re facing now.

 

@RoseE Re: Wanaka Health Bridge recommendations - OMG, open your wallet and beware (imao). A healthy diet should be enough without supplementation, much of this is not taken up by body so produces rich urine. Breathe - I certainly hope so….They forgot social distancing.

The vitamin C dose is excessive, max should be 2000mg /day and even then could give side effects

The CDC is doing a trial of Quercetin but no results as yet
https://clinicaltrials.gov/ct2/show/study/NCT05037240

The max FDA dose recommendation for fish oils is 3000mg/day

Betadine has released information that their products do not prevent or treat covid
https://betadine.com/covid-19/#1596710758955-7978b939-115a

colloidal silver is banned by the FDA and likely to worsen immunity.
https://www.healthline.com/health/colloidal-silver

The vitamin D dose could get toxic if prolonged intake and not deficient
https://bpac.org.nz/bpj/2011/june/vitamin-d.aspx

Article on whether Vit D3 helps, probably only if deficient, it is summer here and most people get good sun and in diet.
https://www.scientificamerican.com/article/can-vitamin-d-help-protect-against-covid/

 

Hm, so they say "The Ministry of Health advises that being vaccinated against COVID-19 is your first form of defence" but no mention of them themselves supporting vaccines...

Keeping generally well and eating healthily before encountering the virus, as compared to chain-smoking and living off junk food, is a sensible enough strategy though no guarantee for keeping you out of hospital.

As for all those supplements, while they don't raise any major alarm bells, at least that I can see (but see @hibiscuswahine's post above), some are straight woo. Others may be mildly helpful for easing the symptoms of Covid but given how little effect supplements have on even just the common cold their claim that this protocol can "reduce pressure on our medical systems" is rather overstating matters.

The main effect is likely to be a much lightened wallet (unless you're relying on the protocol instead of on the vaccine of course, fortunately Wanaka has very high vaccination rates).

 

Thanks so much for finding those references - makes it so easy for me to balance a conversation