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Is ME/CFS seen as a risk/priority group in the vaccination against sars cov 2 in your country?

Discussion in 'General disability topics and advocacy' started by Michiel Tack, Apr 8, 2021 at 7:47 PM.

  1. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    In Belgium, the government plans to start vaccinating people younger than 65. Priority is given to a large group of people with health conditions like diabetes, heart disease, chronic kidney disease etc. This group consists of approximately 1,2-1,5 million people or 10% of the population in Belgium.

    ME/CFS is not included. I'm a bit concerned because young people with severe ME/CFS might be really vulnerable if they get COVID-19 (simply because they are already severely disabled) but they might some of the very last who get a vaccination in our country, probably towards the end of the summer. It's possible for the GP to put patients on the priority list but one has to be lucky that he takes ME/CFS seriously.

    I was wondering how other countries deal with this. Is ME/CFS seen as a risk/priority group in the vaccination against sars cov 2 in your country?

    Many thanks in advance.
     
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  2. Mij

    Mij Senior Member (Voting Rights)

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    In Canada they list 'neurological' disorders such as MS, but not ME.
     
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  3. Wonko

    Wonko Senior Member (Voting Rights)

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    In the UK they are not, although I am aware of stories (on here) of some people managing to persuade their GPs to move them up the vaccination groups.
     
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  4. Mij

    Mij Senior Member (Voting Rights)

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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Not in Ireland

    https://www.gov.ie/en/publication/39038-provisional-vaccine-allocation-groups/

    4. People aged 16-69 with a medical condition that puts them at very high risk of severe disease and death
    https://www.gov.ie/en/publication/3...at-very-high-risk-of-severe-disease-and-death

    7. People aged 16-64 who have an underlying condition that puts them at high risk of severe disease and death
    https://www.gov.ie/en/publication/3...them-at-high-risk-of-severe-disease-and-death

     
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  6. Trish

    Trish Moderator Staff Member

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    Dr Shepherd at the MEA wrote a good template letter for people to use to help persuade their GP. It worked for my daughter.
    It may be useful to adapt to use in other countries.
    https://meassociation.org.uk/2021/0...AUzE4mNzlAmqCPTiDhNUGmA4R2K3n0bEhSL616L55EvoI
     
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  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    In the UK ME is not specifically named in the vaccination roll out priority, but theoretically should be considered for higher priority under group 6 which includes various conditions including ‘long term neurological’ conditions. With these unspecified long term neurological conditions doctors should consider individuals’ level of risk in relation to Covid 19 and include them in group 6 on the basis of their clinical judgement of that risk. The MEA asked the government to specifically name ME in the roll out guidelines, but they insisted the current guidelines are sufficient.

    Group 6 comes after ‘all those aged 65 or over’. The UK has now started vaccinating group 6 and the subsequent two under 65 year old age groups (see https://www.gov.uk/government/publi...id-19-vaccination-first-phase-priority-groups )

    [Note added - in the UK the time lag between the two vaccination injections has been extended from 3 to 12 weeks, in order that many more people have at least the partial protection of of the first jab as quickly as possible. At the time this decision was made that was a large gamble, but so far under lockdown conditions it is looking as if this gamble may have paid off. However it remains to be seen now we are easing the Covid restrictions, if that continues to have been such a good idea.]

    Meanwhile the reality on the ground is a complete mess, and the MEA have provided people with a draft letter to give to their doctors, MPs, local health service purchasers, etc (see https://meassociation.org.uk/2021/0...e-ccgs-in-england-and-health-boards-in-wales/ )

    All of the following are happening:
    • some people with ME were automatically included in group 6 and should now have had at least their first vaccine injection, but many will have had both injections
    • some have been added to group 6 following their approaches to their GP and should now have had at least their first vaccine injection
    • some older patients have not been included in group 6, but have not needed to fight for up graded priority because they are now eligible on the basis of age and those aged over 75 may now have had both injections
    • some Welsh Health Boards have altered the guideline wording to include ME automatically in group 6, but many patients still have to request their GPs implement this change for them as it often does not happen automatically
    • some patients requesting inclusion in group 6 were refused on the spurious grounds of their GP claiming not to have authority to do this
    • some patients requesting inclusion in group 6 were refused on the grounds of their GP claiming that ME does not place people at any additional risk in relation to Covid 19, some even stating that this is because ME is a psychological condition
    • some clinical commissioning groups (purchasers of local GP services) have instructed their GPs to refuse to include ME in group 6
    • some people with ME have been refused inclusion in group 6 but their carers have been invited for early vaccination on the grounds of caring for an at risk patient, ie the person with ME.
    • some people with ME have been given increased priority and others have been refused it within the same GP practice or within the same clinical commissioning group area, though working out what is happening is confused by many people having concurrent conditions and having no idea which condition was used to set their vaccine priority
    The people that obviously feel most justifiably aggrieved are younger adults, teens and children with ME who have been refused inclusion in group 6, but have no idea when (or even if, for teens and children) they might be vaccinated.

    [corrections above and added the following:
    - I am aged 62 and was included in group 6 after sending the MEA template letter to my GP, though the time this process took meant I only received the first injection two weeks earlier than I would have done on the basis of age. My PA has also already had her first injection early, after the nurse vaccinating me said that paid carers could contact the local authority to register as carers too and consequently be bumped up the priority list.]
     
    Last edited: Apr 8, 2021 at 9:17 PM
  8. Perrier

    Perrier Senior Member (Voting Rights)

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    Dear Mij, ME is just not even on anyone's horizon in this land of ice and snow. Maybe we can just show up under the neurological category.
     
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  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Might it be worth taking the information re additional risks for ME as a long term neurological condition in the British ME Association draft letter (see link in the posts above) and sending it to your GP, local health service provider or MP requesting higher priority.
     
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  10. Andy

    Andy Committee Member & Outreach

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    Great to hear that it worked for her. Sadly it didn't for me, "Invites have been sent for all the clinically vulnerable and this cohort has been completed. We are now working by descending age group." was the key part of the, probably cut-and-paste, response I got.
     
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  11. Mij

    Mij Senior Member (Voting Rights)

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    How do we even prove what condition we have when we book an appointment? I have CFS written on my medical file.

    I mean, I'll just tell them I have MS?
     
  12. Perrier

    Perrier Senior Member (Voting Rights)

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    Believe me, I have said the following: she suffers from an illness which is like MS. If you can't get in through the door, go through the window. I am so fed up of all this madness, so utterly unable to contain myself anymore. This is one of the most devastating illnesses on the planet, and look how easily it is overlooked. Say what you need to, to get what you need. You have to do what you have to do. I know I'm a minority on this.
     
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  13. Mij

    Mij Senior Member (Voting Rights)

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    @Perrier

    Do we need to provide some kind of proof or doctor letter though? A healthy person who wants a shot now could make up an illness, no? I haven't tried to book an appointment yet, so don't know how it all works.
     
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  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    This makes no sense at all as people from higher priorities than those currently being rolled out here in the UK who were missed first time round by the call out system can still get themselves added for immediate vaccination.

    Certainly people who are aged over 65 years who have not been invited for vaccination are being told to come forward to be added to the lists. I wonder if some local areas are stretching the truth in order to cope with the current reduction in numbers of vaccines available.
     
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  15. Perrier

    Perrier Senior Member (Voting Rights)

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    Do you have a paper from the govt for the disability tax credit. Just bring that. That is quite a rigorous questionnaire one goes through to obtain that. I will bring that. And I will clic whatever I have to.
     
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  16. Creekside

    Creekside Senior Member (Voting Rights)

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    When I heard that the vaccine was now available in Alberta for my age group with chronic health conditions, I wondered whether ME would qualify, and whether my doctor would write something to say that I might have it. Since I'm not in any great rush to get the vaccine, I'm not worrying about it. Does ME make the virus more dangerous? Does ME make the vaccine more dangerous? I don't think anyone can answer those questions at present.
     
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  17. Milo

    Milo Senior Member (Voting Rights)

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    Public health agencies in Canada have looked at the data of who dies of COVID and who are most at risk. They based their decision on who should get the vaccine first according to this data. They determined that front line workers (mostly health care workers) and seniors were most at risk. So they started vaccinating with these populations in mind. There is no current data saying that ME patients are dying of COVID. There is also no data showing that we have a compromised immune system the same way as patients receiving immunosuppressants such as chemotherapies, prednisone or organ rejection pills following a transplant.

    Their phase 3 is to vaccinate those most at risk, with medical conditions that renders the patient extremely vulnerable should they get COVID https://www2.gov.bc.ca/gov/content/covid-19/vaccine/cev
    on top of vaccinating the general population by age group.

    Considering all of this, i am more than happy to wait my turn to get the vaccine in order to allow those who have more exposure and more risk to get theirs. In the meantime, just like most people, i work on lowering my risk as much as possible. Staying home, wearing masks and washing hands are the best practices.
     
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  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    How ME is considered in Canada continues to make me frustrated, angry, and not optimistic that anything will improve for Canadian pwME any time soon, if ever.

    Small glimmers of hope, followed by large stretches of indifference and inaction.

    As others here have said, ME in Canada doesn't make the cut for earlier vaccinations.
     
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  19. Wits_End

    Wits_End Senior Member (Voting Rights)

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    Hmm, Peter has encapsulated the situation in the UK very thoroughly, I think. All I know is that, sometime over last summer, I sent various pieces of information about ME, including the MEA letter, to my caree's GP*, and following that she got bumped up from nothing at all to "extremely clinically vulnerable". I'd expected her to be regarded as "clinically vulnerable", but the "extremely" surprised even me.

    I actually got my jab before her, because carers were bumped up a couple of steps in the hierarchy, and I was able to attend a vaccination centre, whereas she had to wait for a home visit.

    * See https://www.s4me.info/threads/some-success-with-gp.17065/
     
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  20. Milo

    Milo Senior Member (Voting Rights)

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    How ME is considered in Canada is one thing, and how ME is considered for COVID vaccination is another thing. Are your comments pertaining to the COVID vaccination or in general?
     

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