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

The problem with vaccines is that it is easier to see a bad reaction than it is to see the good they do. I realised that deep down, I truly believe I will not get covid. Despite living in an area where the rate was 500 per 10000 I only know a couple of people who have got ill. That number means 9500 people were not sick so subconsciously I see my family and myself as immune.

I stick to the rules and have had 2 vaccines and a booster because I really, really do not want to get hospitalized or die or drop a level in my ME which would mean completely bed bound.

We always get the flu jab but one year my husband was ill for a week with ... well flu. Whether he was already infected or it just did something to his immune system, who knows but if it had been me I would have thought vaccine, ME interaction yet he has never had a problem in the fifteen year since.

A personal decision with no answers and no one knowing enough about ME to give any guidance.

Though I think it must be fairly safe for people with ME as the vaccine rate is high so must include many people with ME which compares well to the number having side effects especially symptoms which last months.

Not much consolation for the people who have been affected though.

 

Radio NZ article: Emeritus Professor Tate has written to MOH and PM asking for full covid vaccine exemptions for ME/CFS. ME Auckland interviewed about discussions with IMAC around fractionated doses for ME community with MOH response recommending vaccination

“A Ministry of Health spokesperson said it was better for people with ME/CFS to get the vaccine than not get it.We completely understand the concerns of people with long-term conditions such as ME/CFS around vaccination. For these people the benefits of vaccination outweigh the risks of the effects of catching Covid-19 infection.

Temporary medical exemptions application process under the Vaccinations Order is also open to general population with the same strict criteria applying."

The spokesperson also questioned whether fractionated dosing would add to risks faced by those with pre-existing conditions.

"There is no current evidence that having four vaccinations will reduce side effects to vaccination. Indeed, it may increase the risk of side effects since the reactogenicity (which is the expected symptoms you get from your immune system such as headaches, fevers, flu-like symptoms) is expected to increase with each dose," she said.

"There is no current information on what dose interval would work but it is evident that the time to complete a four-dose programme will be longer than a two-dose programme, meaning that this vulnerable group of people would be at risk of Covid-19 infection for longer”

https://www.rnz.co.nz/news/national..._3xtKC_WZf5bECre2B58SDcJooQYF_l6flvo1q1ggWcic

 

I think the idea may be that vaccine mandates are becoming more common, with consequences for those who do not comply, and to make it a valid justification. But I just can't imagine that exemption actually being taken seriously by health care services. It would be a nice idea but has no chance to work in reality.

 

Because NZ had vey quick initial lockdown and border restrictions and lived in elimination strategies and zero community cases for about a year we have only got a rising rate of covid in the last four months. PwME were not on the vulnerable list and there was no perceived risk as had no cases so the vaccine rollout of vulnerable and older people started first, once we had secured enough vaccine at beginning of the year. (NZ has allowed other countries to get their supply first because of increased need and given many supplies to the Pacific Islands, Fiji in particular). Then there was aged bracket roll outs but with delta eventually coming with a countrywide lockdown in August (which continues in our most populous city, Auckland) the vaccine drive has accelerated. Many DHB’s are nearing 80-90% vaccine rates, so now we have the vaccine hesitant population that includes people with ME. Our death rates and case numbers are still very low. Vaccine And Mask Mandates are being strictly applied in expectation of lifting of lockdown in a few weeks moving to regional restrictions/lockdowns as required. If death rates rise and more pwME get covid, this is likely to increase the ME’s community’s sense of benefit over risk of possible relapse/SE.

 

There is an exemption for people with ME who had a severe reaction to the first dose of Pfizer or substantial decrease in function or requiring hospitalisation, it must be confirmed by GP/hospital doctor.

 

Fiona Charlton, president, ANZMES has sent out the following email to the regional groups for wider sharing...

clarifying expert advice on COVID-19 vaccine for people with ME/CFS

"An article by RNZ, which was also picked up and published by Newshub has a misleading heading and some errors within the article that people mentioned in the article have sought to have changed. We have been fielding calls and queries all day regarding it and so ANZMES has released this statement to clarify options and advice for the ME/CFS community. Feel free to send this link to your members, or use the content as your response to queries if you deem this necessary or appropriate."

COVID-19: to vaccinate or not to vaccinate: advice for people with MECFS – ANZMES

 

To me that reads as "We absolutely aren't giving medical advice, but here is loads of it from other people, mixed up with some poor messaging about our survey of a small group of self-selected participants, which will leave many people thinking that ANZMES position is not to get vaccinated (for 'reasons').

 

I totally agree, I saw the ME Auckland committee meeting on Youtube where Prof Tate did a talk on the effects of the vaccine. I was very concerned about the level of medical advice he was giving. He discussed he has a daughter with ME with severe chemical sensitivities and his ME study group has had relapses. He stated ME clients were emailing him from around the country very concerned about risk of relapse. He described how a vaccine works but not on the specific immunology and how in most PwME this is working normally. He also said from overseas reports of pwME, 50% get through covid infection without problems. The other 50% don’t. This adds to the belief that a person can get covid and be fine. No one knows how an individual will react to having covid.

The problem, for me, as a doctor, is that Prof Tate’s experiences and emotional involvement has taken away his objectivity and although with the best of intentions to support the community discussed his opinions and has not stepped away and carefully considering the science with Dr Vallings. He was giving advice on USA’s Dr Klimas protocol, most of the supplements are very expensive and not readily available in NZ and also they have not been clinically proven. So people think they haven’t got optimal cellular biochemistry to cope with the new oxidative challenge. He also mentioned antihistamines and steroids. CDC does not advise antihistamines if no proven allergies. All of that is out of his area of expertise as he is not a medical doctor. A committee member came up with the idea of fractionated dose and contacted IMAC.

ANZMES - Dr Vallings also put out statements about the Klimas protocol on the website/FB/email/mail. She was a lot more positive about vaccination in her client group but did state 1 out of the 20 needed steroids she prescribed in anticipation. That also creates fear as it has no context. This patient may have had MCAS but many pwME believe they have this without formal diagnosis. Dr Vallings has stated in her clinical primer for clinicians that pwME should not get the influenza vaccine or any vaccination on a risk of relapse vs benefit. This also creates confusion and current research suggests that may not be so.

I personally believe Dr Vallings and the other GP in Nelson on the ANZMES board (and who invites GP’s from around NZ to contact them for advice) should have produced a clear document for GP’s and patients with specific risks and proven clinical advice rather than blanket advice to the whole community. But also to give simple instructions to empower self-care plans for the pwME and to put specific questions to their GP about risk, rather than judge their own which appears to be common within support groups.

ETA. It is also good that the MOH have clearly stated that no trial of fractionated doses will go ahead in the pwME community.

 

can we get the long covid alliance to change the status quo in the us and uk and influential countries?

it is very wrong and not ok to allow these diseases to stay at the bottom of the garbage dump with existential risks for the most vulnerable and severe in both directions of teh choice to vaccinate. it is also unnecessary.

it is not rocket science to get studies done on severity levels, diseases, doses, types of v. approve low doses and improve tests.

it is also not a huge set of resources. if you want everybody vaccinated, give them science. do not pretend they do not exist and let them die from covid, even if it is worse than the side effects of the vaccines.

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here is an article shared by m a fluks [public]. the response is not ok imo. note that it mentions pfizer as bad, but i had thought best.

===
Date: November 26, 2021
Author: Michael Hall
URL: https://www.rnz.co.nz/news/national...rs-should-be-exempt-from-covid-19-vaccination


Expert says chronic fatigue sufferers should be exempt from
Covid-19 vaccination
-----------------------------------------------------------

One of the country's leading biomedical scientists has written to the prime minister and director-general of health urging vaccination exemptions for chronic fatigue syndrome sufferers. University of Otago's Emeritus Professor Warren Tate says he is aware of serious reactions triggered by the Pfizer vaccine in several people who have the condition. He believes some of those with the disease shouldn't be expected to be vaccinated.

There are an estimated 25,000 people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in New Zealand. Tate is considered a pre-eminent authority in the country on the disease. Most ME/CFS sufferers develop the illness as a post-viral response. Tate says the physiology of sufferers is profoundly disrupted and at the core of their disease is a dysfunctional immune system, making inoculation with the vaccine potentially dangerous. 'The ME/CFS community, a good proportion of them, should be given medical exemptions because it's quite dangerous for them to have vaccinations when they've got a disturbed immune system,' Tate told RNZ. 'A number of people got in touch with me and they'd had very serious effects unfortunately from taking the vaccination.'

Many had food and chemical sensitivities, and a quarter of sufferers were in the acute phase of their disease and therefore at high-risk of an adverse reaction, he added. 'So there's another sub-group that really would be at risk for vaccinations,' Tate said.

He wants to the government to take those risks into consideration when judging whether people should be given an exemption from the vaccine or not. 'It just doesn't match with what the Ministry [of Health] is trying to feed us at the moment - that there aren't vulnerable populations out there. They should be given exemptions at least to the point where they're not stigmatised by the fact that they haven't been vaccinated. I totally support what the government has done, and what the Ministry of Health has done so far in the pandemic. I think they've done a fantastic job. But I think this has to be more nuanced, just like protecting people in rest homes, older people in the community, in the first phase.'

ME/CFS sufferers' symptoms include pain in organs and tissues, cognitive dysfunction, headaches, debilitating fatigue, and disturbances of the autonomic nervous system, which regulates functions like heart rate, blood pressure and sleep. Preliminary findings of a survey of ME/CFS sufferers and those with Long Covid, carried out by the Associated New Zealand ME Society (ANZMES), found nearly 20 percent of the 359 survey participants had experienced a relapse, with worsened symptoms that had not returned to baseline, after taking the Pfizer vaccine. The findings will be submitted to the Immunisation Advisory Centre (Imac) and the Ministry. Tate has also submitted data to Imac over his concerns.


Fractionated dosing

ME Auckland vice-President Kate Duder told RNZ several of her support group had their conditions triggered after being vaccinated. She said the group, alongside ANZMES, was now in talks with the Ministry of Health and Immunisation Advisory Centre (IMAC) about carrying out an alternative dosing trial involving four smaller doses instead of two standard doses. 'I have ME and react to a lot of things, so I've been very cautious about getting the vaccine when I can't even take supplements,' she said.

A Ministry of Health spokesperson said it was better for people with ME/CFS to get the vaccine than not get it. 'We completely understand the concerns of people with long-term conditions such as ME/CFS around vaccination. For these people the benefits of vaccination outweigh the risks of the effects of catching Covid-19 infection. Temporary medical exemptions application process under the Vaccinations Order is also open to general population with the same strict criteria applying.'

The spokesperson also questioned whether fractionated dosing would add to risks faced by those with pre-existing conditions. 'There is no current evidence that having four vaccinations will reduce side effects to vaccination. Indeed, it may increase the risk of side effects since the reactogenicity (which is the expected symptoms you get from your immune system such as headaches, fevers, flu-like symptoms) is expected to increase with each dose,' she said. 'There is no current information on what dose interval would work but it is evident that the time to complete a four-dose programme will be longer than a two-dose programme, meaning that this vulnerable group of people would be at risk of Covid-19 infection for longer.'
===

 

They are forcing people with ME/CFS to risk sacrificing their health even further, all for the "greater good."

I know that a survey isn't a reliable source for adverse reactions, but at the very least, they should wait until more studies are done before forcing vaccines on an already-vulnerable population.

Btw, I am not anti-vaccine, just think that if you're a pwME who is e.g. severely disabled and homebound you should be allowed to make your own informed decision. Grateful that I don't live in NZ.

EDIT: Sorry, must have confused NZ policies with the news of certain counties like Austria implementing (or considering) full mandates.

 

ANZMES has dialed back on their advice in response to that article pasted above and the fractionated dose trial has been scrapped for now.

https://anzmes.org.nz/covid19-to-vaccinate-or-not-to-vaccinate-advice-for-people-with-mecfs/

Vaccination in NZ is not being forced on anyone, it is still a matter of personal choice but our risks are greater than the general population. But if you are not double vaccinated you can not participate in many things go into shops/pubs/hairdresser etc.

I am moderate-severe, only leave the house for medical appointments and got my second Pfizer today after talking with my GP and preparing myself, I see getting covid worse for my ME, especially if not vaccinated. Covid has very severe effects on many organs. No one knows how it will effect them.

They recommend you make an informed decision with your GP based on current scientific evidence (arising all the time). Astra Zeneca has now been released in NZ and they are reviewing other vaccines like J&J.

I do hope they do good surveys of the entire ME pop, it would really help inform us.

 

Mandated vaccination applies only to a few specific employment sectors, as detailed on the NZ Ministry of Health site. There is the background social pressure to be vaccinated but also the ability to participate fully in society (e.g. restaurants, concerts) with a vaccine passport. I think the intent of the discussion being (probably not well) summarised in the article was to try and offer support to GPs to enable them to authorise an exemption for individual patients — at least those pwME well enough to engage in society and deemed particularly at-risk of adverse vaccine effect.

I am very pro-vaccination, but this issue is complex. The scientific understanding is incomplete and developing quite rapidly. It seems clear that some people have significant deterioration. I may even be one of them. The ability to predict this would be ideal of course, but until that time it seems overly simplistic to state that the benefits of vaccination outweigh the risks of COVID, full-stop. I don't think that holds up for all people. Very important for policymakers to be keeping pace with scientific progress.

I also think there is much more to be written on the subject of SARS infection and vaccination - the spike protein seems capable of causing more mischief than simply allowing ingress to cells via ACE receptors.

 

. I am not sure if that was a mistake but you have no evidence for that statement. Benefits of vaccination on a population are very clear. On an individual level, of course, it is not a simple matter and hard for people to weigh the evidence, including doctors advising their patients and medical panels advising the MOH.

Sorry to hear that you may have got worse with vaccination, could you expand?

 

I am pretty sure this is intended to refer to benefits to a specific person, not to society at large. (And making some assumptions knowing that SNT is a medical professional.)

Which is objectively true, as there is no way to know each individual person's circumstances that might influence their reaction to the vaccine, their exposure to COVID, and their potential risk factors for severe illness (like yes, having ME could make a potential COVID infection much worse!)

I understand why public health authorities feel the need to dumb it down, but I would argue that it is misleading, not effective messaging, and has the side effect of eroding trust in those very same institutions.

I was wrong about NZ -- I confused the policies with Austria. But I'm sure other counties will follow.

 

The ANZMES clarification is an improvement on the RNZ piece, making it clear that they're only calling for exemptions for a small, particularly vulnerable subgroup of pwME rather than for a blanket exemption, and that for most pwME the risk of complications from Covid is higher than the risk from the vaccine. Plus they nuance their survey results by pointing out most pwME had no major adverse reactions and some even had some improvement. None of which was mentioned in the RNZ piece. So yes, these clarifications are welcome.

However, having read the ANZMES statement twice I'm still not sure what exactly they are lobbying for? Presumably that some pwME should get a vaccine pass without being vaccinated by way of a medical exemption? But who precisely should such an exemption apply to? They say this:

Not every pwME has hypersensitivities but we all, by definition, have a significantly compromised level of activity and are prone to relapses. Which makes their definition vague enough to cover all of us which then contradicts the claim it's not a blanket ask for exemptions for pwME. Also, the most severe pwME - likely the only ones with any hope of obtaining an exemption - are the least likely to be needing a vaccine passport anyway I would have thought, since we don't go out anywhere.

Which brings us back to the unpalatable fact that pwME are stuck between a rock and a hard place when it comes to deciding whether to take the vaccine. There's just too little information yet on which to base any medical advice (whether you call it that or not) and I think it would be better if they (patient organisations and ME experts) didn't try. I understand they're doing so in an attempt to help but I think it would be better to just give a list of 'this is known' and 'this is not known' plus some relevant questions to consider by individuals depending on their personal circumstances and leave it at that.

Disclosure: I'm fully vaccinated and had no problems which may colour my attitude to vaccination.

 

Yes — apologies — of course. After editing down for brevity, my comment didn't end up as I intended. A good example of how careful you have to be when discussing this topic. My intro "I am very pro vaccination" and outro "full stop. I don't think that holds up for all people." didn't end up communicating my intent, now that I read it back.

It was the blanket statement I was questioning. I was trying to say "it seems overly simplistic to state that the benefits of vaccination outweigh the risks of COVID in everyone: including a narrowly defined, known-to-be-vulnerable and medically very complex sub-group of a population — a sub-group with immune derangement that is not scientifically understood."

Of course there is absolutely no doubt that vaccination is of enormous benefit to a population and personally I have always taken every vaccine offered through my life. (And fear not! My sub-speciality is not involved in advising patients on vaccines - or indeed any medication.)

To answer your other question @hibiscuswahine: for the first six months of my illness I was mild, still able to hold down three highly demanding jobs (>full-time in total) including on-call and all the peripheral non-clinical work that is associated. I had a precipitous decline that disabled me to the severe end of moderate (clearly unable to work) out of which I am slowly climbing to an uncertain future. I'm now at the mild end of moderate and able to do some limited work part time from home.

That final decompensation happened 7 weeks post vax #2 and given that interval, I had not considered it to relate at all until recently. I had thought in hindsight that I was probably just on a natural slow, unrecognised decline and then fell off the proverbial cliff. However, following discussion with colleagues with high level knowledge, this sort of pattern is being seen in some ME patients here and around the world. So, while still unlikely, that is why I said it may have been the case for me.

So I hope that goes some way to explain how someone like me, who would always be fiercely pro-vaccination might now consider the situation to be "complex" and needing more scientific enquiry.

 

Follow-up article just posted.
https://www.rnz.co.nz/news/what-you...-covid-a-new-type-of-chronic-fatigue-syndrome

 

@SNT Gatchaman. All good, Will be interesting to hear the opinions of those higher up one day…..hopefully with a nice clinical trial and more precise physiological evidence.

I am glad to hear you can still do some work (and do your scientific investigations and collaborations). I clung on to the very end, more and more part-time, no nights for many years then down to 4 hours per week but it couldn’t last forever. In the end I couldn’t drive to peer review to maintain my practising certificate so my plans to set up private practice went in the bin. But have a happy creative life now. I have applied my retroscope many times, we never want to repeat the causes but this illness does what it does.

My recent relapse was from 4 hours of no sleep with a storm, it is a unhappy reminder of how fragile my health is and how difficult the decision to get vaccinated is. I also had a reaction to the first Pfizer but I also lived in Eastern Europe throughout the pandemic and was unvaccinated (not by choice) having to rely on shielding, masks and tight bubbles and was definitely exposed to Delta there and on my way home a few months ago. We are all playing a numbers game but I felt I may as well do it now while in relapse and work slowly back up. Hopefully your booster goes well if you choose to have it.