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

Discussion in 'Epidemics (including Covid-19)' started by Hutan, Oct 25, 2021.

  1. Hutan

    Hutan Moderator Staff Member

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    Last edited: Dec 1, 2021
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  2. Hutan

    Hutan Moderator Staff Member

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    ANZMES, one of the national ME/CFS charities here just emailed this out:
    At this time, Covid-19 is just starting to spread in the country. Hopefully most people with ME/CFS will have already been vaccinated and this email won't have much impact on vaccination hesitancy. But I think it will give some people who have been feeling hesitant a reason to not be vaccinated. And it will feed prejudices against people with ME/CFS if they try to get vaccination exemptions.

    I haven't followed the vaccination threads. Is there any evidence to support the ideas against vaccination for people with ME/CFS or the suggestions of taking antihistamine, antioxidants (NAC, glutathione, CoQ10) expressed here. What studies have there been on the impact of Covid-19 vaccinations on people with ME/CFS?

    For background, I have had two Pfizer doses and did not experience any particularly remarkable side effects. I'm aware that some members have had different experiences. It's possible that my personal experience leads me to under-estimate the risk to people with ME/CFS.
     
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  3. Hutan

    Hutan Moderator Staff Member

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    My son found this CDC page for me
    Interim Considerations: Preparing for the Potential Management of Anaphylaxis after COVID-19 Vaccination

    It does not sound as though taking antihistamines prior to vaccination is at all helpful, and may perhaps mask early symptoms for long enough for you to get out of the supervised waiting period and have your anaphylactic shock on your own, in your car.
     
  4. mango

    mango Senior Member (Voting Rights)

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  5. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    No one in Australia is getting any long term exemptions at all, which is concerning as in Victoria, the vaccine is basically mandatory - you can't get a hair cut without one, nor work.
    In the case of anaphylaxis, you have to have an attack from both AZ and Pfizer before you are exempt (catch-22) even in people with prior history of anaphylaxis with intubation following an influenza vaccine (which shares ingredients with the AZ vaccine).
     
    Last edited: Oct 25, 2021
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  6. RoseE

    RoseE Senior Member (Voting Rights)

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    Just thought I'd share this in case it is helpful.

    Update on Vaccination Exemptions:
    The info on vaccine exemptions on the MOH website was updated 9th Nov. It now specifically mentions that people with severe ME/CFS can get a vaccine exemption if they have a severe reaction to the first dose.

    Refer Category 1B. Serious Adverse Event to previous dose (see screenshot and link below to criteria).
    "A serious adverse event to previous dose... An adverse event is considered serious... if it... results in persistent or significant disability /incapacity"
    The Examples given include 'severe ME/CFS'.

    Below the criteria table it also states:
    Other adverse events that have been reported to the Centre for Adverse Reactions Monitoring (CARM), the Immunisation Advisory Centre (IMAC), or have been observed internationally include shingles, appendicitis, lymphadenopathy with or without fever, exacerbation of myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS), regional pain syndrome, and neurological events with localised arm pain. These events may or may not be related to the vaccine and it is generally advised to defer the second dose until the symptoms have fully resolved.

    Refs:
    ____________________________
    NOTES:
    • if you do have a severe reaction to the vaccine and it effects how you can look after yourself, your GP may be able to quickly arrange temporary personal cares and home support while you recover.
    • If you are having trouble getting your vaccination done, the Disability team at Healthline provide tailored bookings including assistance with coordinating transport to and from the vaccination site and arranging the necessary support/accommodations during the appointment. Perhaps even a home visit, if required. Call 0800 28 29 26 and push '2' (8am - 8pm 7 days a week)
     

    Attached Files:

  7. RoseE

    RoseE Senior Member (Voting Rights)

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    Possible research into fractionated doses of the pfizer vaccine for pwME

    Fiona Charlton sent this information out this week:
    People have previously been encouraged to complete the survey that ANZMES currently has open about vaccination experiences, concerns and interest in participating in research.
    Refer - https://forms.gle/Ws61g7VTGRopBnUr5
     
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  8. RoseE

    RoseE Senior Member (Voting Rights)

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    ANZMES have released preliminary results of their self-report vaccination experiences survey...
    ANZMES Preliminary survey findings – ANZMES

    Key result from this self-reported survey:
    "These findings suggest that the more disabling the ME/CFS symptoms, the more prone to a relapse after vaccination but that relapse can occur at any functional capacity state for pwME"
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://anzmes.org.nz/tag/survey/
     
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  10. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

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    It was an interesting snapshot of the NZ ME/CFS community, especially severity of illness and why the advisory’s have now been put into the Pfizer vaccine exemption protocol.
     
  11. 5vforest

    5vforest Senior Member (Voting Rights)

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    What are the advisories that have been put in place?


    Obviously one must weigh the risk/benefit of the vaccine according to their own circumstances, but I would understand any pwME refusing it based on the large % of respondents who report a permanent worsening of symptoms.
     
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  12. Trish

    Trish Moderator Staff Member

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    I am concerned that unscientific surveys like this can easily give a false picture of the balance between risk from the vaccine versus risk from the disease.

    People who have had an adverse reaction may be more likely to make sure they fill in surveys than those who had no or mild reaction.

    ME/CFS fluctuates anyway, so a proper study would have to have a control group of unvaccinated pwME reporting worsening and relapses over the same time period.

    And comparison would need to be made with pwME who catch covid and any adverse reactions to the disease.
     
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  13. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

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    “Other adverse events that have been reported to the Centre for Adverse Reactions Monitoring (CARM), the Immunisation Advisory Centre (IMAC), or have been observed internationally include shingles, appendicitis, lymphadenopathy with or without fever, exacerbation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), regional pain syndrome, and neurological events with localised arm pain. These events may or may not be related to the vaccine and it is generally advised to defer the second dose until the symptoms have fully resolved”

    There are strict criteria which are outlined before this statement which can be read here. https://www.health.govt.nz/system/files/documents/pages/vaccine_temporary_medical_exemption_v1.2.pdf
     
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  14. Helene

    Helene Senior Member (Voting Rights)

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    This is something I've been wondering about. This isn't in relation to vaccines but is there any information on how people with ME who catch Covid fare in comparison to people who are healthy previous to catching Covid.

    I guess there would be so many factors involved it would be difficult to determine this without a huge study so I've probably answered the question myself.
     
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  15. Hutan

    Hutan Moderator Staff Member

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    I have been rather concerned about the way ANZMES approached this whole thing. First they sent out a letter in which people, who many in the NZ ME/CFS community greatly respect and believe are experts in ME/CFS, raised the spectre of people with ME/CFS suffering greater than usual side effects. The letter also suggested pre-dosing and post-dosing anti-histamine regimes that are recommended against by the CDC. Then they asked people to fill out a survey asking people how they feel about the vaccinations, and what side effects they have experienced. And the survey is then used as evidence to suggest that the ME/CFS population is special and needs a study into an alternative delivery approach.

    I think ANZMES has unnecessarily raised alarm in the ME/CFS community. The consequences of getting Covid-19 (or getting it without having been vaccinated) are likely to be rather worse than the consequences of being vaccinated. There is also the stigma that anyone who has not been vaccinated faces, particularly when in the medical system - adding to the stigma that an ME/CFS diagnosis already brings.

    From the survey: 115 people who have been vaccinated had no change or temporarily worsened after the vaccinations. 20 improved. 48 worsened into a relapse - this isn't entirely unexpected, given the effort it can take to be vaccinated, including sometimes waiting and sitting for maybe an hour. 8 reported worsening 'beyond illness'. Perhaps that was because of the vaccination, perhaps it was because of the effort to get the vaccination, perhaps it was due to something else. Given that this was a self-selected relatively small sample of people, and the selection bias will be towards those people who feel the vaccinations harmed them, that is hardy a compelling case for widespread harm.

    30 people had not been vaccinated at the time of them filling out the survey. Again, given the bias in the sample, this is not suggestive of a large portion of the population who are feeling concerned about vaccination. At least, not before they received ANZMES' communications.

    With respect to the proposed study that this survey aimed to provide support for, I would not be at all surprised if the Ministry of Health was looking at ways to get vaccine hesitant people over the line. They may well be thinking 'if splitting the dosage over several vaccinations is what it takes, well, whatever'. So, they may be pleased to support the study, to see if an alternative delivery approach does give people protection. Maybe they are thinking 'if it works in people with ME/CFS, then the approach could be offered to other groups with vaccine hesitancy based on a concern about illness relapse, (mostly as a sop)'.

    I wonder if the people of ANZMES have fully thought through how they will feel if someone, whose concerns about the vaccinations were amplified by the letter it sent out, is too scared to be vaccinated and then goes on to get Covid-19, and becomes very sick or even dies. Or if someone who is led to believe that the alternative delivery mechanism is necessary for them decides to wait to be part of the proposed trial, and, in the meantime, is similarly infected with Covid-19 and is either seriously ill themselves, or passes it on to their elderly parent carer, who becomes seriously ill. With Delta spreading around the country right now, these are not unrealistic scenarios.
     
    Last edited: Nov 16, 2021
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  16. Daisybell

    Daisybell Moderator Staff Member

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    I was concerned about the survey - I’m one of the respondents who basically felt fine…. A slightly sore arm after the first dose only.
    I’m quite sure that my recent deterioration is nothing to do with being vaccinated and totally due to trying to do more than I can sustain!
     
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  17. Hutan

    Hutan Moderator Staff Member

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    From a study by UK ME/CFS charities (follow the arrow to the post)
    Also problems with selection in the UK survey too, I guess. But I don't think ANZMES has helped the people it aims to serve make a rational weighing of the evidence of potential harm.
     
  18. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

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    I agree the sample is biased, I found the ME specialist and scientists reports both alarming and comforting. They are dependent on ME clinicians in USA and their advice has not undergo clinical trials just clinical experience. I agree they should have canvassed the whole community.

    But no one knows the effect of the vaccine on a group who has known immune triggers to an illness. Unfortunately you can’t set up a prospective trial of a vaccine in the middle of a pandemic on such a vulnerable patient group, it’s unethical as this is a life saving and reduces morbidity. However when you have patient reports on morbidity like serious deterioration in their functioning, you have to start weighing all the risks and benefits. One thing is how socially isolated the person already is due to their illness and level of social contacts, and how stringent their social contacts are with preventative measures like mask wearing, social distancing and vaccination status.

    There are medicolegal aspects here for our medical community and government within NZ, Once respected people speak out, reflecting on their own clinical and patients collective experiences, they can’t ignore it and need to offer advisories, as knowingly giving a treatment without that advice has legal and other consequences and costs.

    Hooking it up to a clinical trial is very problematic. I am one of the group who have had a reaction to first Pfizer dose while in relapse and having to weigh up all the risks/benefits of having the second dose with my GP and my own clinical understanding of my ME and covid. I like the concept of fractionated doses, there is potential to be useful to know this information to help inform vaccination in our population. However, covid is not widespread yet in NZ and you signed up to a trial and might feel reluctant to break the trial process if you feel your exposure risk is too high and you get covid, not good. So people would need to have a lot of information before giving consent. This trial might not get ethical approval so waiting for them to sort it all out might not be a good strategy either.

    CDC are doing a fractionated dose trial on healthy adults, to look at their antibody titres etc, the study results have not been released
    https://clinicaltrials.gov/ct2/show/NCT04852861
     
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    It was interesting to observe the different approaches some of the charities took in the UK and in NZ. In the UK they lobbied for early access to the vaccine, arguing that pwME are particularly vulnerable if catching the virus. In NZ they lobbied for an exemption from the vaccine mandate (only affects people working in certain jobs), arguing that pwME are particularly vulnerable to vaccine side effects. Of course both could be correct and the emphasis given to one or the other has undoubtedly a lot to do with the amount of virus circulating.

    My sense is that in NZ a lot of people, probably subconsciously, still don't expect to actually catch the virus. So they just compare getting the vaccine with its risk of side effects against not getting the vaccine which obviously wouldn't have any side effects. Well, until you catch the virus that is, probably for Christmas the way things are going. Yet few people seem to be comparing the side effects of the vaccine against the effects of the virus, which strikes me as the more relevant comparison unless you can completely isolate for a very long time.

    My guess is that ANZMES are being asked for advice and are trying to help by collating information and 'expert' opinion ('expert' because none of them are experts in vaccines nor, for that matter, experts in vaccines for pwME for the simple reason that there exists no solid evidence they could be experts in). What ANZMES fail to take into account is the emotional environment - which includes a lot of scared and scientifically illiterate people - that they unleash their incomplete information into. People who are already worried will just see that some people got worse from the vaccine and at that point their reasoning shuts down and they won't be doing a rational risk-benefit analysis anymore. It's a very difficult environment to communicate in. ANZMES did do a better job presenting the survey results with caveats than they've done in the past but I don't think they were clear enough for readers without scientific literacy.
     
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  20. Fizzlou

    Fizzlou Established Member (Voting Rights)

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    I was very fortunate that after a few rough days I gained a temporary improvement. I estimate about 25 points on the MEA scale. Only from my first Pfizer. Gradually returned to baseline over about 5months. Usual autumn decline set in.

    Managed to ‘walk in’ for booster on Saturday. I’m waiting to see now.

    I have contacted a couple of charities about this but one didn’t respond even to a follow up email. I would like to find out more about why this could happen. My guess is maybe an autoimmune component?

    The ANZME survey suggests 6 % temp improvement whereas others stretch to mid 20’s but the phrasing is usually quite poor. There was quite a lot about LC vaccine improvers in the media in the spring but it seems quiet now.
     
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