New Zealand: Covid-19 vaccinations for people with ME/CFS

yes being told "we completely understand" sets my teeth on edge.

 

I don't know as I'd have to see more data.

There are others such as the COVAX-19 subunit vaccine from Australia (that isn't produced in significant numbers yet).

 

I recall that Aaron Ring at Yale recently received a SOLVE award to look for autoimmunity in ME/CFS - using genetically modified yeast to produce proteins (targets to test for autoimmunity in this case).

So, interesting to see the way that the technology, for identifying antigens and producing copies of those targets has improved - yet we still have laboratories producing unreliable tests for autoimmunity.

@Jonathan Edwards has highlighted that there's no evidence of classic (B-cell autoantibody) autoimmunity, and that a leading expert (Angela Vincent) is doubtful that ME/CFS is an autoimmune disease.

It would be interesting to see the techniques you refer to applied to ME/CFS and indeed Lyme (which resembles ME/CFS)

 

Not sure if this is the right thread for this, but it was the most relevant I could find.

An interesting article comparing different countries’ approaches to the pandemic focusing mainly on New Zealand and Sweden shared by the Governor General

see https://www.stuff.co.nz/national/ex...eWGPVhez8uwNCzI8c7MveDlHZnMD-0INR2LAf5peIa10g

 

I was particularly struck by the article accessible from that one:

Comparing SARS-CoV-2 natural immunity to vaccine-induced immunity: reinfections versus breakthrough infections | medRxiv

"Conclusions

This study demonstrated that natural immunity confers longer lasting and stronger protection against infection, symptomatic disease and hospitalization caused by the Delta variant of SARS-CoV-2, compared to the BNT162b2 two-dose vaccine-induced immunity. Individuals who were both previously infected with SARS-CoV-2 and given a single dose of the vaccine gained additional protection against the Delta variant."

 

ource: Stuff (New Zealand)
Date: December 18, 2021
Author: Cecile Meier <cecile.meier@stuff.co.nz>
URL: https://www.stuff.co.nz/national/he...id19-vaccine-exemption-despite-expert-support
Ref: https://www.stuff.co.nz/national/he...wants-illness-added-to-vaccine-exemption-list

m-a fluks

 

I think this is some of the thinking behind the UK strategy with schools.

 

Moved posts

As an organisation with a mandate to support and provide advocacy for pwME, I think it was appropriate for ANZMES to initiate a patient self-report study to highlight that some pwME seem to be having adverse and long-lasting reactions to the vaccine. ANZMES did the study in response to requests for information from their members.
Isn't this one way to encourage understanding and research into issues? ....by raising individual observations and case studies?

I think it is good to acknowledge that given we know that ME/CFS is often triggered by a viral immune challenge, then it is plausible that a viral vaccine challenge may cause ME/CFS or make it worse. A vaccine assault is likely to place some stress on the body.

I am aware that the ANZMES committee thought long and hard about doing the survey, because they did not want to create fear. Being able to provide information won.

I am personally aware of several people with ME who are experiencing their worst symptom level for years, post-vaccination - and for going on 6+ months now.
The people who have lost functionality, that may have taken them years to reclaim, deserve some acknowledgement of their situation. It's easy to get lost in percentages, but the effect on someone's life is traumatic.

Other patient bodies acknowledge the issue:
(yes, still based on self-report surveys, so there may well be response bias towards negative experiences)

ME Association UK - https://meassociation.org.uk/wp-content/uploads/COVID-VACCINES-AND-MECFS-May-2021.pdf

• page 2 (bottom of 3rd column)
  "As with any vaccine, some people with ME/CFS will have an exacerbation of symptoms, especially those that overlap with the commonly reported side effects of the COVID-19 vaccines. A smaller percentage (possibly around 5 to 10%) are reporting a more severe or persisting exacerbation of ME/CFS."
• page 3 (middle of 1st column)
  "However, a small but significant minority, possibly around 10%, are experiencing a more significant relapse or exacerbation of their ME/CFS, or having more pronounced side-effects. This is clearly a very worrying situation for people in this group, especially when it comes to deciding on whether or not to have the second jab if you have still not recovered."

Solve ME/CFS surveyed their You + ME Registry cohorts (ME & Long Covid) on vaccine reactions.
ME/CFS respondents - 19% worsened
https://solvecfs.org/after-vaccinat...s-more-likely-to-worsen-compared-to-controls/

 

Crossposted with @Trish

Conducting the survey on vaccine responses was appropriate, I think, for the reasons given by @RoseE. What was missing though, especially given the inflamed debate around vaccination, was putting the results into perspective. Yes, there is a significant minority of pwME who report serious adverse effects after vaccination and that needs to be acknowledged or, better still, investigated.

But there is also a significant minority of pwME who report serious adverse effects after infection with the corona virus. The data for that would have had to come from overseas as at the time of the ANZMES survey we didn't have many infections in the community in NZ.

The only such survey I can think off right now was Cort's which showed 42% of pwME (and/or FM?) were not back to baseline after 6 months. It's not a large survey, there may be better ones out there, but the key point is that in communicating results it has to be clear that to get vaxxed or not to get vaxxed for a pwME unfortunately is 1) a lottery and 2) a choice between pest and cholera. Not what anybody wants to hear but in order to make an even vaguely informed decision you need to know both sides of the story.

These were previously posted but to save searching here they are again:
The ANZMES survey: https://anzmes.org.nz/anzmes-preliminary-survey-findings/
Cort's survey: https://www.healthrising.org/blog/2...fection-and-vaccine-side-effect-poll-take-ii/

 

Crossposted with @Ravn

As @Trish pointed out any decision on whether to have the vaccinations involves not only looking at the risk of having the injections, but also the risk of not having them. So any organisation pointing out the risks of being vaccinated should be duty bound to point out also the risks of not having the shots.

Also they have a duty to report the flaws in their own data. The various patient group surveys done by charities around the World are important and informative as to possibilities, but are not reliable as to the percentages of people experiencing any particular response. I am assuming the ANZMES survey involved people selecting themselves to respond to an appeal online from the charity, the same approach the UK’s MEA employed. This means we have no guarantee of a representative sample or of the accuracy of their responses.

Currently we have the contradiction that people with ME are seen as at higher risk of complications from the virus, meaning they should be of higher priority to be vaccinated than the general healthy population but at the same time we are also at higher risk of adverse reactions to being vaccinated. Our charities and advocacy groups need to carefully navigate this situation ensuring people have the tools to make informed choices, especially as the nature of the virus and the increasingly likely probability that it will become endemic across the World. Even New Zealand, which has done a better job than most countries in fighting the virus, is seeing significant increases in the number of people with the Omicron variant, as illustrated in this article shared by the Governor General on her personal Facebook page: “Auckland epidemiologist Rod Jackson urges New Zealanders to take Omicron seriously” https://www.rnz.co.nz/news/national...iueES1Lyz5B6SwaFHrsCUetRpUYUzuz_bpqrqHjX-V9c0 . Here in the UK, where there is no longer any legal requirement for people with Covid-19 to self isolate and the ending of free testing is likely soon, it is probable that the only way to avoid contact with the virus will be for an individual to sustain indefinitely the highest level of self imposed lockdown.

The costs of remaining unvaccinated are likely to be high and indefinitely ongoing, so people not getting vaccinated need to decide on the basis of evidence relating to their own personal risk. It is important that our charities ask the more specific question, not what is the overall potential risk of people with ME responding badly to the vaccinations but how can individuals with ME know what their own individual risks are, what distinguishes between those of us who do not suffer long term adverse responses and those of us that do.

 

fyi I am not involved in ANZMES, so not my survey. But in my country.

I don't believe ANZMES has every advised its members to not have the vaccine. Rather they shared recommendations that experts considered that "that contracting COVID-19 poses a greater risk to health than the side effects of the vaccination".

 

Yeah and I reckon they did with "Please note that this survey is classed as a self-report questionnaire which seeks to ascertain the subjective experience of people with ME/CFS and co-morbid conditions. The information collected is therefore anecdotal data. No clinical research has been conducted."

With the increased infectiousness of the Omicron variant and its entry into NZ, it definitely does change the risk factors for pwME here. Prior to that pwME here who chose not to get vaccinated were likely to be able to shield /isolate themselves successfully.

The initial results for the ANZMES survey were published in October, when most thought we could probably avoid widespread community infection.

 

It would be interesting to research whether pwME experienced increased fear from hearing that some people believed that they were experiencing severe reactions from the vaccine.
Because a lot of people I speak with say the anecdotal survey results helped to reduce the uncertainty, allowing them to way up the decision more calmly, and often going on to make the decision to vaccinate as a result.
I think there is a psychological principal about uncertainty creating fear and anxiety. Acknowledgement of a situation has a lot of value.

 

People were already worried before the survey.