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

Milo, my daughter has had Bronchitis a few times, when she gets a cold. She can't seem to shake off colds, and then they slip down. These episodes have required medical intervention. So, I don't want to risk things. I am running around, and if I carry in the stuff, that will be very bad. But you are correct, there is no data on ME patients dying of Covid. But now there is ample evidence that the younger folk are getting very seriously ill, and so, I believe if an ME patient became ill, it might not be pleasant.

 

@Milo, I mean both; pwME in Canada are not priorized for earlier vaccinations.
ME is still not on the list of serious neurological diseases for which vaccinations can be done earlier.
For whatever the rationale, it appears our disease is not considered an additional risk for a worse COVID outcome.

 

..and it probably never will be.

In order to be recognised as a risk they would have to collect data, to assess the risk, and as far as I know no one, on the planet, has any interest in doing this.

So, no data to indicate risk, therefore they can keep trotting out the same line, that there is no evidence to suggest increased risk so no reason to give a higher priority.

 

The British MEA say they have reports of people’s ME being significantly worsened following Covid 19 and this applies to most people with ME who have had Covid-19. However what I have seen gives no idea of the number of reports this is based on and what percentage report this ongoing deterioration.

Obviously there is also high risk of selection bias in relation to who is reporting their experiences to the MEA.

 

Not in New Zealand. This is the current list of conditions considered a priority for vaccination. Can't see ME making the list even if it does get reviewed. I just hope we can keep the virus out of the country until we're all vaccinated anyway. Sadly not even a possibility for most countries.

https://www.health.govt.nz/our-work...ing-vaccine/covid-19-when-you-can-get-vaccine

 

Notably other conditions like Asthma are also not considered to be a part of the risk/priority group in Australia...

 

In Hungary the priority groups are not public, so there is no way to know when you are supposed to get the vaccine. A doctor leaked the diseases in risk group 1 though, so we know that people with diabetes, heart, pulmonary diseases, cancer etc are included, basically people most threatened by serious covid complications. (And professional athletes were also among the first to get vaccinated... hmpf)

Hypothyroidism is in risk group 2 but I only know that because it was written on my document (I'm not actually hypothyroid but it's a long story).

We have no idea about the rest, but what we know is that it is also changed on a whim sometimes (in the case of pregnant women and teachers).

Unfortunately, transparency is far from the norm here. For example, even in the first few weeks/months of covid, they didn't share in which part of the country the infections happened or who died (they only shared the number of deaths, no other data). That changed later but not sharing important information with the public is not rare here.

 

In Germany, we can get the vaccine either in one of the big centres or at the GP's office.

ME is not mentioned as a priority group but your GP can classify you as such to send you off to one of those centres.

The GPs as of now only get a very limited supply. I got myself on 2 waiting lists. But there, they go strictly by age (understandably so), so I'm at the very end of the queue.

With a diagnosis of "severe depression" you are considered at risk though, at least in my state. Since many of us do have depression as a wrong diagnosis in our file that might be a route to go, too.

 

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

Not in Sweden.

People who have home healthcare (hemsjukvård) or home help (hemtjänst) are considered a priority group, so some pwME are offered the vaccine on that basis. (Home healthcare and home help are services offered by the municipality, and they vary a lot between different municipalities and regions.)

 

UK:

please encourage all friends with ME who have had COVID-19 to complete this survey.

#ME Action want to use it as evidence to show the impacts the virus has on ME patients. But please complete also if it was a mild infection and there are no lingering after effects.


https://www.meaction.net/2021/03/22/investigating-the-impact-of-covid-19-on-me-survey/


Thank you @Peter Trewhitt for your brief, succinct (!) outline of the whole U.K. situation.

 

"hypothyroid" - interesting. I had wondered if it was relevant re ME in the past.

 

It didn't require any active persuasion from me. They simply sent me a text asking me to book my vaccination. I'm 30.

 

When my GP asks me 'how is your fatigue", it's pretty much sealed that I won't be put on any priority list.

 

It appears that they are mobilizing vaccination units in buildings (mostly in 'high risk' areas) to anyone who wants a vaccine now. Tenants are sitting out in hallways getting the jab. It most likely won't happen in my building, but I am more than happy to come down and stick my arm in any mobilized truck/car window/drive through at this point.

 

Do we even know if we have worse, the same or (unlikely) better outcomes after covid as compared to the general population?

I got the shot as soon as I could, in part because I did not have the capacity to weigh in balance highly speculative an incomplete information on whether I’d be more knocked out by the disease than the shot or vice versa.

I figured that going through the course of the disease is going to be much worse than going through a dress rehearsal for it, so I got the shots. But I’m pretty sure somebody over 70 with compromised lung function is at risk of dying, while I’m just at risk of being three-quarter dead instead of half.

My state sort of solved the problem; the Guv forced still infected people into nursing and rehabilitation homes, which had the effect of reducing the population of those homes. For this, Hollywood gave our governor an Emmy award.

 

My GP has put me in category 2, so I can expect to be vaccinated with the 75-79 year olds in a week or so (I'm 54, so would be way down the list otherwise). This was a pleasant surprise, I didn't apply for it, my wife phoned the GP and said "what category is my husband in?" and they said "ah yes, tumor in the pituitary gland, category 2". I do have a cyst in my pituitary gland, but I was MRI'd three times over a couple of years and it's not growing, it seems harmless and has probably been there for years. I don't know if I'm in category 2 for that, or for ME, or for asthma I had years ago and is still on my records. No idea, but I'm keeping quiet and waiting for my appointment.

 

My son, who lives in Belgium has Type 1 diabetes and that is not a priority there. The govt there aim to vaccinate their adult population by Sep I think.