Should PwME be medically treated as 'high-risk' Covid patients?

Just reading this interesting article from the BBC about drug developments for treating Covid. It includes:

I imagine that as a PwME, my chances of getting Paxlovid if I became Covid-positive would be pretty much zero, even though a viral illness that I caught 35 years ago has caused ongoing severe disability, indicating that I have a propensity to get whacked hard and long by viruses.

Should PwME be on the list for this stuff? Are we, and I just don't know it?

Discuss!

 

I have been thinking about this for the past few days too. I plan to ask my GP about it when next we speak. He got me the vaccine pretty early (without even being prompted!) so I am optimistic that he might be willing to prescribe me paxlovid too if it's within his power.

Check appendix A of this document for the inclusion criteria given by the Brighton and Sussex NHS Trust. MS is included but, predictably, ME/CFS is not. It feels like we're just being neglected as usual. I doubt ME/CFS even crossed anyone's mind.

 

Thanks, @Cheesus. I think the key thing is that if it makes sense for PwME to be classed as high-risk, we shouldn't have to argue it ourselves on a case-by-case basis to our GPs because that becomes a GP lottery. It looks as though you've already determined that PwME aren't classed as high-risk.

Does anyone know if our charities are doing anything about this?

 

We are not currently classed as high risk.
Dr Sheperhd of MEA wrote something on their FB page recently about it, sorry i cant find a link but if you go to their page & scroll down you'll find it.

 

Thanks, found it - it's here.

 

I would hope that those with very severe ME at least would be classed as high risk.

 

Having got COVID just under 2 weeks ago, I tried speaking to 111 and my GP about getting anti-virals as I was crapping myself that I would be make much worse from the virus.

A GP from my surgery (not my normal GP) told me in no uncertain terms that she was 99% sure I’d not get them. But, she said she would email some other service to check - not had any thing meaningful beyond from them.

111 said they would get someone from their ‘clinical team’ to call me back - this was Monday last week and am still waiting (clearly too late for any benefit from them).

So, I think we can guess whether we will be included in any kind of risk category.

The list of illnesses that are eligible for AVs is quite limited and from what I have heard from some contacts, it’s a shambles getting AVs for those who are on the list let alone those of us who think we should be. The GP I spoke to tried to push it to needing to be a consultant that prescribes, yet the NHS guidance says GPS or 111 are the first ports of call.

One thing that did make me chuckle (and then inevitably cough my lungs up whilst on to 111), the lady I was speaking to asked about my ‘care plan’, to which I said, erm, I have ME, there is not care plan and she replied, no, surely you must have one.. I had to explain a bit more.

Thankfully, despite still testing positive on day 11, I’m feeling a huge amount better - but still concerned about long term impact on my ME. Time will tell.

 

Sorry to hear about your bad experience there, @Fainbrog, and the fact that you're not back to baseline yet. Fingers crossed.

Your experience is exactly what I'd expect to happen to all PwME without national guidance or pushing from our charities.

 

Curious about your take on this, @Jonathan Edwards. Presumably there is a massive shortage of these drugs at the moment and that is why there is hard rationing? Or not?

 

Thanks, it did feel very much a long shot, but had to try.

Could probably have been dealt with more sympathetically I feel, at least from my GP surgery, with whom I have had amazing service since getting ill.

Perhaps I wasn’t my usual charming self, feeling like crap as I was , she did at one point say, you can ask 3 times (which I think I had in different ways) it’s not going to change the answer.

I totally accept that in the scheme of things there are probably more seen as needy than myself if they are in limited supply given the history of ME..

Such a long way to go.

 

In a slightly flippant response, and given your name @Fainbrog (it’s a shame we never think of a suitable response quickly enough), a quick:

“Sorry, I suffer with constantly severe cognitive dysfunction, so I can’t remember where I am in a conversation, what I have said so far and what I want to say!”



I hate “important” phone calls. Give me a WebChat any day, because I can read and re-read what they have told me so far and carefully think about what I actually want to say or ask…..

 

> Should PwME be on the list for this stuff? Are we, and I just don't know it?

idk if you are referring to a single list, but i'd say for pwme and similar:

- paxlovid and studies on it for pwme shold be done
- similar treatments and studies for pwme shold be done
- vaccine efficacy and reactions and studies etc.
- covid progression risk categories and studies etc.

here is a cdc list https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/underlyingconditions.html .
where is m.e.? where is lc? where is ...? this is not rocket science. the studies need to be done. no more guesswork.

 

I feel completely confindent in stating that we will not be on any list making us vulnerable/needing antivirals on the merits of having ME alone, until such time as a biomedical test is found which shows irrefutable proof of an aetiology which would mkae us more likely to develop severe/life threatening illness should we catch covid.

It causing a major worsening of our condition is entirely irrelevant to the powers-that-be, since they think CFS is feeling tired all the time, and Severe ME/CFS is feeling very tired all the time. If that were true then why would it merit expensive antivirals and other measures, especially when they are worried about the virus developing resistance to the drugs.

The battle to convince them that Severe ME is very nasty & sufferers should be protected by all possible & reasonable means from their condition becoming Very Severe, is just part of the battle to convince them of the reality of our existence.

People think i am terrified of covid.
I am not.
But i am terrified of very severe ME, and if they knew what it entailed, they would be too.

 

I finally asked my GP about this. He said it would not be possible and that he could not even ask a consultant at the hospital to prescribe it. There is no discretion at all. Either we make it onto the list or there is no possibility of getting it.

I asked him this when he came to visit me because I am bedridden. We had just had a long conversation about the fact that I have not been downstairs in my house other than when carried out by paramedics for nearly 8 years. I'm not sick enough though, apparently.

He did say that he'd be happy to give me a 4th dose of the vaccine. Not really what I wanted to hear. Also suggested I see a psychiatrist to deal with my anger about psychiatrists, but that's another story.

 

Presumably you'd have to pay them for the privilege too

 

> I feel completely confindent in stating that we will not be on any list making us vulnerable/needing antivirals on the merits of having ME alone, until such time as a biomedical test is found which shows irrefutable proof of an aetiology which would mkae us more likely to develop severe/life threatening illness should we catch covid.

it is of course desperately needed for many pur poses, including for each of us to know our diagnosis.

but i will not pin hopes re persecution on a biomarker. it is possible a biomarker leads to little change in persecution.

> It causing a major worsening of our condition is entirely irrelevant to the powers-that-be, since they think CFS is

> feeling tired all the time, and Severe ME/CFS is feeling very tired all the time. If that were true then why would it

i don't actually know what they think. [i am asserting my own ignorance, globally, and not disputing your knowlede.] i find it hard, these days, to figure that out, and i observe that thinking is hard to measure. arguably we live in a crypto-eugenics society.

there is all sorts of stuff to get confused over, like motivated reasoning and rational ignorance. what is a belief? philosophers argue.

HOWEVER, [unpublished blog post] i think it often does not matter. especially in cases of misopathy.

different kinds of apparent thinking can produce the same result! the opportunist, the zealot, the cold-blooded mastermind, and the dutiful rubber stamper, as eichmann was controversially characterized by, can all result in the same thing. so too with apathy and conformity.

such should relieve us of pulling our hair out about why our persecutors do what they do -- just a bit. we can reserve our probing into their thinking for trying to predict their actions, as you have done. and for legal purposes.

[roughly speaking, some laws like crimes against humanity DO NOT REQUIRE intent to harm population etc.]

there is a positive duty to do the right thing; what they think does not change that. the right thing is reasonably known to scientists --- viz. immune knowns and unknowns. levels of severity fragile and consequential.

> merit expensive antivirals and other measures, especially when they are worried about the virus developing resistance to the drugs.

their being willing to literally sacrifice our lives for such things is no excuse. this is human rights.

> The battle to convince them that Severe ME is very nasty & sufferers should be protected by all possible & reasonable means from their condition becoming Very Severe, is just part of the battle to convince them of the reality of our existence.

to me they know or should know the reality of our existence. even whitney's paper is relevant all by itself.

to me the overriding need/goal is to make it relevant to them. that can be more than appealing to decency and rationality. to act morally, they might need to be convinced that they will experience consequences if they do not.

legal consequences, bad publicity, chewing out by boss, whatever it takes.

> People think i am terrified of covid.
I am not.
But i am terrified of very severe ME, and if they knew what it entailed, they would be too.

i affirm that this is the issue. i am bedridden except barely bathroom not able to take care of other basic needs, no support network, no sustainability of survival ability, and constant attacks on survivability and health.

paxlovid and so on need to be available to pwme and related, v research needs to be done on , research in general needs to be done on these populations, support needs to exist, reality of our existence demands that bare minimum.