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

It's posted here too:

https://anzmes.org.nz/experts-talk-covid-19-vaccine-for-people-with-me-cfs/

 

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).

 

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:

• Website page on exemptions: https://www.health.govt.nz/our-work...ons/covid-19-exemptions-mandatory-vaccination
• Exemption Criteria: https://www.health.govt.nz/system/files/documents/pages/vaccine_temporary_medical_exemption_v1.2.pdf

____________________________
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)

 

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

 

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"

 

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

 

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.

 

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.

 

“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

 

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.

 

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!

 

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

 

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.

 

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.