Samuel
Senior Member (Voting Rights)
yes being told "we completely understand" sets my teeth on edge.
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New Zealand: Covid-19 vaccinations for people with ME/CFS
- Thread starter Hutan
- Start date
yes being told "we completely understand" sets my teeth on edge.
Snow Leopard
Senior Member (Voting Rights)
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)
Peter T
Senior Member (Voting Rights)
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
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
MeSci
Senior Member (Voting Rights)
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."
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."
Samuel
Senior Member (Voting Rights)
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
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
ME/CFS respondents - 19% worsened
https://solvecfs.org/after-vaccinat...s-more-likely-to-worsen-compared-to-controls/
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."
ME/CFS respondents - 19% worsened
https://solvecfs.org/after-vaccinat...s-more-likely-to-worsen-compared-to-controls/
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I agree it is important to acknowledge that a proportion of pwME have had
1. worsening after a vaccine.
But those needs to be studied carefully in the contexts both of
2. worsening, including death, organ damage and Long Covid, after catching Covid
and
3.downward fluctuations in ME symptoms that occur to a proportion of pwME for all sorts of other reasons at any time, including after travelling to get the vaccine,
and the relative frequency, duration and severity of each of these 3 possibilities put side by side in any publication of results and before any blanket advice to have or not to have a vaccine is published for pwME.
I agree it's OK to do surveys, but there is a huge responsibility on organisations who do them not to base on a small skewed unscientific survey, advice that goes against the potentially life saving advice to the rest of the population to have a vaccine.
Does your survey, and the advice based on it, give any of that sort of comparison information? Does it specify the age and other comorbidities of the participants, as those factors have a huge impact on likely outcome from catching Covid when unvaccinated. Does it specify how long lasting and how severe the symptoms were for the people who had worsening after vaccination?
In othe words, was the advice not to have the vaccine based on scientific evidence, or on a small inadequate and unscientific survey that only gives partial information?
Any organisation that advises its members not to have potentially life saving vaccines on the basis of incomplete information is in my view irresponsible. I think the only responsible way to tackle this is to advise people to review the situation with your doctor if you have an adverse reaction to the first dose.
Now that countries are opening their borders and in many cases abandoning covid restrictions and safeguards, and there are extremely easy to catch variants of Covid spreading rapidly, and it has become clear that herd immunity isn't going to get rid of Covid as people catch it multiple times, I think it increasingly likely that all of us, however isolated and careful, are going to catch covid sometime. It's clear from UK current experience that the vast majority of those in hospital because of Covid, and especially those in intensive care and dying from it, are almost entirely unvaccinated.
I would not want to have it on my conscience if I advised people not to be vaccinated on inadequate data, and subsequently some who took that advice became very sick or died from Covid. I think ME organisations should leave such advice to medical authorities and to people's doctors.
Edit to add. I have just read the excerpt from a Science article that RoseE posted on another thread that makes it clear that, while Long Covid like illness and other problems such as blood clotting, has occurred in some people following vaccination, the proportion is much smaller than Long Covid and other adverse effects after Covid infection. So the advice on that basis is clear. People, with ME or not, should be advised to be vaccinated.
1. worsening after a vaccine.
But those needs to be studied carefully in the contexts both of
2. worsening, including death, organ damage and Long Covid, after catching Covid
and
3.downward fluctuations in ME symptoms that occur to a proportion of pwME for all sorts of other reasons at any time, including after travelling to get the vaccine,
and the relative frequency, duration and severity of each of these 3 possibilities put side by side in any publication of results and before any blanket advice to have or not to have a vaccine is published for pwME.
I agree it's OK to do surveys, but there is a huge responsibility on organisations who do them not to base on a small skewed unscientific survey, advice that goes against the potentially life saving advice to the rest of the population to have a vaccine.
Does your survey, and the advice based on it, give any of that sort of comparison information? Does it specify the age and other comorbidities of the participants, as those factors have a huge impact on likely outcome from catching Covid when unvaccinated. Does it specify how long lasting and how severe the symptoms were for the people who had worsening after vaccination?
In othe words, was the advice not to have the vaccine based on scientific evidence, or on a small inadequate and unscientific survey that only gives partial information?
Any organisation that advises its members not to have potentially life saving vaccines on the basis of incomplete information is in my view irresponsible. I think the only responsible way to tackle this is to advise people to review the situation with your doctor if you have an adverse reaction to the first dose.
Now that countries are opening their borders and in many cases abandoning covid restrictions and safeguards, and there are extremely easy to catch variants of Covid spreading rapidly, and it has become clear that herd immunity isn't going to get rid of Covid as people catch it multiple times, I think it increasingly likely that all of us, however isolated and careful, are going to catch covid sometime. It's clear from UK current experience that the vast majority of those in hospital because of Covid, and especially those in intensive care and dying from it, are almost entirely unvaccinated.
I would not want to have it on my conscience if I advised people not to be vaccinated on inadequate data, and subsequently some who took that advice became very sick or died from Covid. I think ME organisations should leave such advice to medical authorities and to people's doctors.
Edit to add. I have just read the excerpt from a Science article that RoseE posted on another thread that makes it clear that, while Long Covid like illness and other problems such as blood clotting, has occurred in some people following vaccination, the proportion is much smaller than Long Covid and other adverse effects after Covid infection. So the advice on that basis is clear. People, with ME or not, should be advised to be vaccinated.
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Ravn
Senior Member (Voting Rights)
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/
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/
Peter T
Senior Member (Voting Rights)
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.
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.
The point is, ANZMES did not provide good information. They amplified fear by providing misleading and unbalanced information.
Probably worse than the survey was the letter it sent out first, with comments from people including Professor Warren Tait and Dr Ros Vallings. Professor Tait, who is seen by many in the NZ ME/CFS community as an expert on ME/CFS talked about the negative experiences of two people he knew. It is not at all clear if their experiences were actually related to their vaccination and, even assuming they were, it was impossible to know how serious and long lasting the negative effects were. Dr Vallings, also widely regarded as an expert by ME/CFS patients, suggested a treatment to take to reduce side effects of the vaccine - a treatment that the US CDC has recommended against, noting that it does not materially reduce side effects and can delay an allergic reaction until after the observation period. It therefore actually increases the risk from vaccination. The net result of that communication from ANZMES I am sure, was to increase concerns about the vaccine. It also probably resulted in some people turning up at their GP's office, anxiously wanting pre-vaccination medications, and adding to the negative stereotypes many doctors hold about people with ME/CFS.
Soon after that communication that primed responses to be negative, the survey came out. There were problems with it as an information gathering exercise - self-selection and vague questions. But, let's assume the information is good - this is what was reported:
- 137 (38.1%) experienced no change/stay the same
- 118 (32.9%) temporarily worsened but have returned to baseline
- 71 (19.8%) worsened and not returned to baseline – relapsed
- 22 (6.1%) improved
- 11 (3.1%) worsened beyond anything experienced in illness to date – severe relapse
As I and others here have said repeatedly on this and other threads, there was no acknowledgement of the risk related to not being vaccinated, or of the fact that, inevitably, people will eventually be exposed to Covid-19 unless they take extraordinary measures to isolate themselves from the world and loved ones. There was no mention of the fact that people who are not vaccinated will face stigma in the medical system and elsewhere - as if we didn't have enough stigma. There was no consideration of the negative impact of ANZMES actions on how ME/CFS is viewed by the staff of the Ministry of Health.
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.
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.
Thanks for clarifying that, RoseE.
I agree acknowledgement is important for those who are suffering, whether vaccine side effects or harm from the virus. But that's a different issue from publishing misleading surveys. I don't agree with ANZMES, the MEA, Solve or any other ME organisation publishing percentages from unscientific surveys in this context, nor with individuals regarded as experts by patients providing misleading information about ancedotal stories and unevidenced drugs. The context is too serious to be risking frightening people about the vaccine.
Yes, they did put disclaimers on things. But the fact remains that they shared information that increased concerns about the vaccination from influential people in the ME/CFS community. It's possible to do both.
That's not what they did - they started campaigning for a fractionated dosing trial - including trying to get support for it via the survey. Just the suggestion of that will have made some people worried about having a full dose of the vaccine. It was left to the Ministry of Health to hose down that idea.
People were already worried before the survey.
Yes, probably partly because of the letter ANZMES sent out, and communications in the media by ANZMES and Professor Tait (quoted earlier in this thread). And then there's this:Rose, there's lots of good commentary earlier in this thread - we are going over the same ground.