NHS treatments for people who get covid...?

Mij said:
How did he determine that you weren't at risk of severe acute Covid?
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Sorry that you weren't approved @josepdelafuente. My impression is that this is moreorless a tick box exercise. I was told by my GP that it was nothing to do with them and that St. george's ( our local covid centre hospital) would decide.
Somewhere along the way I picked up that there was a list of designated conditions that were approved for paxlovid and that if you didn't have one of these, then no vaccine.
I don't think many people in the UK have been prescribed it.
Have you thought of trying ME Association for advice?
 
Binkie4 said:
Sorry that you weren't approved @josepdelafuente. My impression is that this is moreorless a tick box exercise. I was told by my GP that it was nothing to do with them and that St. george's ( our local covid centre hospital) would decide.
Somewhere along the way I picked up that there was a list of designated conditions that were approved for paxlovid and that if you didn't have one of these, then no vaccine.
I don't think many people in the UK have been prescribed it.
Have you thought of trying ME Association for advice?
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Ah yea Guy's & St Thomas for me I think. Yea the situation seems to be as you describe. The doctor I spoke definitely sounded like he was grappling with something, metaphorically, and he didn't really sound like he was 100% behind his decision (I explained that I have ME that predates the covid, and that the first covid infection made the ME worse etc), and he sounded very sympathetic and like he understood my concern about the ME getting worse again etc..
I hadn't thought of trying the ME association... I can find out for myself but do you know already if this is something they're engaging in? (I suppose I mean specifically advocating for ME sufferers to be prescribed paxlovid if they have new covid infections)
 
I hope things improve soon for you, Joseph. I think it's probably worth keeping records of your symptoms, and anything you have equipment to measure like resting heart rate, how much heart rate rises if you get up, temperature, oxygen levels with a finger pulse oximeter. Any unhealthy looking data might help if you try again to get paxlovid or need to ask for any other medical help.
 
Trish said:
I hope things improve soon for you, Joseph. I think it's probably worth keeping records of your symptoms, and anything you have equipment to measure like resting heart rate, how much heart rate rises if you get up, temperature, oxygen levels with a finger pulse oximeter. Any unhealthy looking data might help if you try again to get paxlovid or need to ask for any other medical help.
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Good idea! Also hadn't thought of that. I don't have any of the stuff but it looks like I can get it online and have it delivered tomorrow.
It looks like a thermometer and finger pulse oximeter would cover temperature, heart rate and blood oxygen... any other useful bits of kit for this sort of thing?
 
Mij said:
How did he determine that you weren't at risk of severe acute Covid?
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because they think ME/CFS is a mental health condition. The official line is that they recognise it as being neurological - they have to say that because the uk is signed up to be in line with the WHO which defines it as neurological. So the official line is that its neuro. But what the british medical establishment say & what they do are very different. Its like the old saying - 'What they do speaks so loud you cant hear what they say'. A bit like an abusive partner who says 'i love you' while punching you.

Throughout the pandemic they made it very clear (apart from the very rare & odd enlightened GP)that they do not see ME as being in any way a 'pre existing health condition', let alone a serious one putting us at risk of serious health outcomes. And if they knew how bad very severe ME was they would know that its a great deal worse than dying anyway. I was, still am terrified of ending up very severe, if i thought it would kill me i wouldnt be scared at all!

We were excluded from vulnerable status for the vaccine roll out, for shielding & priority supermarket deliveries (which was a total nightmare for those of us who're housebound) & basically abondoned to our fate. To be honest i am surprised that they were so sympathetic re the paxlovid, i would have expected them to dismiss it... with prejudice.

i'd say @josepdelafuente was 'lucky' not to be sneered at, i dont know of anyone with ME who has been given it, even bedbound very severe. And i do know a few people who were pretty much laughed at by their GPs when they asked to be classed as vulnerable for the vaccine

I'll be happy to be proved wrong, but thats the state of play in my experience. disgusting, but there we are.
 
JemPD said:
because they think ME/CFS is a mental health condition.
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Yes I understand this, but what does testing + for Covid and then being denied a prescription for Plaxlovid have to do with M.E? Are they selective with who they deny Covid prescriptions for?

Maybe I'm missing something here?
 
Mij said:
Yes I understand this, but what does testing + for Covid and then being denied a prescription for Plaxlovid have to do with M.E? Are they selective with who they deny Covid prescriptions for?
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I think it's more that the list of included conditions is very resticted.

The highest-risk patient groups
The IAG has identified that people in the following groups may be eligible for COVID-19 treatments. Not all people within these groups are eligible for treatment. Rather, people within these groups will need to fulfil specific criteria relating to their condition (or treatments received for their condition) to be eligible for treatment.

These groups are regularly reviewed and currently include some people who have:

  • chromosomal disorders affecting the immune system, including Down’s syndrome
  • certain types of cancer or have received treatment for certain types of cancer
  • sickle cell disease
  • certain conditions affecting their blood
  • chronic kidney disease (CKD) stage 4 or 5
  • severe liver disease
  • had an organ transplant
  • certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)
  • HIV or AIDS who have a weakened immune system
  • inherited or acquired conditions affecting their immune system
  • rare neurological conditions: multiple sclerosis, motor neurone disease, Huntington’s disease or myasthenia gravis
Additional criteria, including certain conditions not listed above, apply to children and young people (CYP) in order to be eligible to access these treatments. Families of potentially eligible CYP will be informed by their specialist clinician of their eligibility and provided with information on accessing treatment.

This list was developed based on clinical evidence of poorer outcomes from COVID-19 in the specified groups and expert agreement on the risk of poor outcomes from COVID-19 despite vaccination. It is important to note that this list is different from the list of health conditions that previously identified people as ‘clinically extremely vulnerable’ or those that were advised to shield.[footnote 1]

It is also different from the list of health conditions that make someone eligible for:

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https://www.gov.uk/government/publi...-new-covid-19-treatments-a-guide-for-patients
 
Mij said:
Yes I understand this, but what does testing + for Covid and then being denied a prescription for Plaxlovid have to do with M.E? Are they selective with who they deny Covid prescriptions for?

Maybe I'm missing something here?
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yes its given only to those on a list. Those included are only those who they think "really need" it. ie people who are immunocompromised or are otherwise at high risk of serious complications from covid.
Treatments for coronavirus (COVID-19) - NHS (www.nhs.uk)

Who can have a COVID-19 treatment
You're eligible for these COVID-19 treatments if you have not been admitted to hospital and all of the following apply:

  • you're aged 12 or over
  • you're at highest risk of getting seriously ill from COVID-19
  • you have symptoms of COVID-19, which are not getting better
  • you have tested positive for COVID-19
People at highest risk
You may be at highest risk of getting seriously ill from COVID-19 if you have:

  • Down's syndrome, or another chromosomal disorder that affects your immune system
  • certain types of cancer or have received treatment for certain types of cancer
  • sickle cell disease
  • certain conditions affecting your blood
  • chronic kidney disease (CKD) stage 4 or 5
  • severe liver disease
  • had an organ transplant
  • certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)
  • HIV or AIDS and have a weakened immune system
  • a condition affecting your immune system
  • a rare condition affecting the brain or nerves (multiple sclerosis, motor neurone disease, Huntington’s disease or myasthenia gravis)
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Ok, thanks for explaining.

I will go back to my original question to @josepdelafuente. How do they know for sure who will develop acute Covid symptoms? Do they have a crystal ball? It's my understanding from reading tweets from critical care nurses, emergency room doctors et that anyone can develop severe acute symptoms and they are advising people to stop assuming that having comorbidities is the only high risk group. They work in the hospitals and treat the actual patients.
 
Mij said:
Ok, thanks for explaining.
I will go back to my original question to @josepdelafuente. How do they know for sure who will develop acute Covid symptoms? Do they have a crystal ball? It's my understanding from reading tweets from critical care nurses, emergency room doctors et that anyone can develop severe acute symptoms and they are advising people to stop assuming that having comorbidities is the only high risk group. They work in the hospitals and treat the actual patients.
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You're right - obviously they can't predict the future and they can't "know", it seems the people making these systems haven't understood what you lay out above, and are coming at it from the angle of statistics / probability (mistakenly, by the sound of it).
I'm assuming they ask the screening questions (I've remembered a bit more of what they asked me since yesterday, luckily my symptoms have already improved quite a bit since yesterday), and if the answers sound like someone who is "less likely" to have severe acute covid then they don't get the drugs... And if they're wrong, they're wrong and that's obviously terrible for the person who goes on to develop the severe acute covid, but I'm assuming it just comes back to something to do with finances, and there not being the resources to just give the drugs to everyone who tests positive..

Some of the other questions I was asked by the 4 different NHS staff who I spoke to (two doctors, a "clinical lead" and a "medicine distribution centre assessor (I think!)", were:
"are you having trouble breathing?" (I wasn't),
"can you hold both arms above your head for some amount of time" (I can't remember how long, and I could),
"can you put your chin against your chest?" (I could),
"do you know who you are and where you are?" (yes),
"is there anyone else in the house" (yes, my housemate)
"do you have a high temperature?" (yes, I did)

oh... and the final doctor I spoke to said some things which were a bit confusing / contradictory... when I mentioned M.E and said that there's no treatment, they said "not yet, but there is research happening!", which took me by surprise a little (that they said that), but then they also recommended I should do some bits of exercise to prevent this covid infection being even worse (?!), and then immediately afterwards they said "but obviously limit the exercise to what is manageable with the M.E"....
 
Thanks for including the list b/c if I ever become ill with a + Covid test, I'm going to answer 'yes' to all those questions asked, whether it's true or not.

My M.E onset 32 years ago was sudden/viral and I was never given any antiviral treatment. I always wondered if I was treated early in the onset if that would have made a difference? I'll never know.
 
To be fair, I know of no evidence for PWME being more at risk with Covid. Categories like 'immune' or 'neurological' are too vague to be relevant. We don't have any strong theoretical reason to think PWME would be more at risk either. If anything on the theoretical side there is a reasonable argument that PWME are more likely to get an adverse reaction.

So I don't think this need have anything to do with dismissing ME. If I were to make the decision I would not advise PWME that they should take an antiviral any more than anyone else. I don't know the general evidence on Plaxlovid but it is quite likely hyped or still unclear.
 
Mij said:
Thanks for including the list b/c if I ever become ill with a + Covid test, I'm going to answer 'yes' to all those questions asked, whether it's true or not.

My M.E onset 32 years ago was sudden/viral and I was never given any antiviral treatment. I always wondered if I was treated early in the onset if that would have made a difference? I'll never know.
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Yea... It crossed my mind to do that but I don't necessarily know if answering yes to all those questions would have got me the drugs!
 
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