Covid treatments in the UK

Eligibility for Covid treatments in the UK

This NHS letter details who will be eligible for antivirals if experiencing covid outside of a hospital setting:
https://www.england.nhs.uk/coronavi...tivirals-for-non-hospitalised-patients-v2.pdf

It states "rare neurological diseases" in the inclusion criteria, listing MS, Huntingtons, parkinsons and myasthenia gravis.

Feels like this is a repeat of the vaccination criteria fiasco and that this has even worse ramifications for pwme, excluding us from life saving treatment without basis and unlike with the vaccine where some could find the energy to advocate for themselves, pwme who are going through covid won't have the energy to advocate.

Nb: the prevalence of the "rare" neurological diseases listed, and ME, are roughly as follows:
MECFS: 130k to £260k
Parkinsons: 145k
MS: 130K
Huntingtons: 7k
MG: 700??

I realise it's all supposedly based on likelihood of hospitalisation, not what is fair for the individuals with these diseases, but I don't feel comfortable with any of these prioritisation exercises given the history of the treatment of people with ME.

 

Are the charities going to address this? I always just assume nothing applies to us.

 

Sure, but you're only going to know if you do the research in the first place.

 

I think it is the point about rare neurological diseases and sweeping statements on these. ME being excluded with no evidence or I guess consideration.

My judgement I think is clouded after a long term and for me serious adverse reaction to the AZ vaccine and now getting Covid.

There was no interest and I experienced downright cruelty from the NHS regarding my long term reaction to the vaccine. No one interested in looking at it or using any new or existing drugs to try and mitigate the effects (apart from migraine meds through the neurologist when I paid him). Still waiting for new disabilities to be investigated.

Now, with Covid I can see the same thing happening. I am not sick enough for hospital but I am sick enough to lose the ability to care for myself and I rely on my partner to keep me alive.

This will go through the normal path of a severe viral illness with no medical treatment on the months or years to come apart from courses of antibiotics from the GP. There never will be a report written and no one will ever see or assess me. I will essentially be left as I have been left before.

It may be that some of these drugs could have saved me from the hell of the last 9 months after the vaccine, when even the ME charities and groups deliberately ignored us.

It could be that these drugs could save me from this winter of being sick with Covid as my body fails to fight it off again. This is a well trodden path of winter flus. We join the ranks of ME and Long C in one but with the experience of this happening so many times.

 

Moved post

Has anyone looked into getting paxlovid (Pfizer's tablet treatment for covid) if they get a positive covid test?



Covid is rearing its head in spades round here- 3 close friends diagnosed in a week. I haven't seen them physically for over a year but I do have two medical appointments next week that I need to keep and I am way, way overdue for a eye test.

I received a package through the post (unsolicited) a couple of weeks ago, labelled something to the effect that it was for those identified as at risk if they got covid. I have just started to read online the instructions for paxlovid use if I were to be prescribed it and I just can't read anymore. Medication instruction sheets freak me out anyway. Everything seems contraindicated.

Any info about paxlovid very welcome. Maybe it's being prescribed in US. I haven't heard of anyone being given it but my package suggests something is being planned.

eta: https://www.gov.uk/government/news/...al-to-be-deployed-to-countrys-most-vulnerable ( just came across this press release published in UK yesterday. It gives the details of the start of anti viral plans in UK)