NHS treatments for people who get covid...?

Jonathan Edwards said:
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.
Click to expand...

Good to know. When you say "at risk", do you mean at risk of a severe acute infection?

And by "adverse reaction", do you mean an adverse reaction to paxlovid (rather than to covid infection)?

My concern was more to do with potential long-term effects - like having long covid "on top of" ME, which seems to be what happened the first time I had covid..

And therefore hoping that an "anti-viral" drug might reduce the risk of long term worsening of ME etc..
 
Yes, I don't think we have reason to think ME is a risk factor for severe infection.
And tes an adverse reaction to Paxlovid.

I don't think we have any useful information on risk of ME worsening with a further infection (rather than an initiating one). I agree that it is something that comes to mind as a possibility but I doubt we have any strong basis for thinking it is reality.
 
What about taking Plaxlovid to ameliorate symptoms faster rather than suffering for the next week +?

What is the risk vs benefit of taking an antiviral?

I'm in the M.E subgroup that gets reactivation of viruses every 2-3 yrs and my GP has never given me a script for antivirals when it could have shortened my suffering.
 
thank you for sharing @Jonathan Edwards its interesting and reassuring to read your comments. I think i have been seeing things through the lens of negative experiences rather than based on facts, its good to reconsider.

I have never been nervous that ME made me high risk in terms of ending up on a vent or dying, but based on anecdotal reports i havent yet heard of a PwME who has had covid & it not left them worse than they were before.
That is what scares me, because life worse than i am right now is not worth living.

ISTM just from keeping my ears open over the yrs that most people who are now severe very severe became so after a 'worsening event' which was either another infection or physical 'trauma' of some kind like surgery, (or after either organised/prescribed GET or massive & prolonged over-exertion of some kind for other reasons). I mean a mere cold will knock many of us into serious relapse, it took me months to go back to 'baseline' after my last cold (about 10yrs ago), how much more would something like covid knock me down.

So while i appreciate that the reports of worsening after covid are only anecdotal, getting worse after infection doesnt necessarily mean the infection caused the worsening, & the 'sample'i am hearing about from mainly social media, may well be skewed in favour of negative reports, those reports combined with my own experience of post infection recovery when you have ME, seemed to me to be sufficient to be worth treating us as vulnerable during the pandemic generally.

But i do recognise after reading your comments that being given paxlovid, which will come with it's own risks, is not the same as being seen as "vulnerable" in the greater more general scheme of things, and given current state of knowledge about what is going on in ME, being prescribed it (as a matter of routine like someone who is immunocompromised would be prescribed it) isnt based on any kind of evidence & therefore would be as likely to precipitate worsening in itself if a bad reaction were experienced.
 
Yes @JemPD, you have laid it out clearly. Things aren't easy but maybe it helps to tease things out sometimes. We need more documentation just of the natural history of ME. Which is why I keep telling the government working party that we need dedicated academic clinicians who see PWME year in year out and base research on knowing what things are really like.
 
JemPD said:
How are you feeling now @josepdelafuente ? hopefully no worse, so sorry you've got this to deal with i do hope it passes & you recover quickly
Click to expand...
Thanks for asking, still feeling very ill and all the same symptoms, but all markedly less severe. I managed to sleep well & long and when I woke up this morning I could immediately feel that everything had gone down a level (in terms of... badness(?))
Yesterday was very full-on! (symptom-wise)

So yea hopefully I'll get another good sleep and feel another notch better tomorrow. My test this morning came back positive pretty much instantly again. So I'll keep testing etc..
 
It certainly does help to tease things out, & is one of the reasons i love S4 :)
your input is so much appreciated Jonathan, as always.

Jonathan Edwards said:
We need more documentation just of the natural history of ME. Which is why I keep telling the government working party that we need dedicated academic clinicians who see PWME year in year out and base research on knowing what things are really like.
Click to expand...

Yes this has really brought home to me how it imperative getting that data is.
 
I am not sure about ME and immunocompromised.

After I had the first 2 vaccines, my antibodies were measured and while I showed a positive response to the vaccine on a yes/no scale, the scale I was measured on gave a number that was very low. The lab thought it was a mistake and repeated the test (at no extra charge) and got the same result. I had very few antibodies and my GP pronounced me immunocompromised and in need of the third primary vaccine (which nobody seemed to know about although I had it in the end.)

This might have been a result peculiar to me and nothing to do with ME. I had such a severe adverse response to the next vaccine. The trouble is we just don't know much about ME. It has left me concerned about getting covid but I'm not sure if I'd be counted as properly immunocompromised ie on the list for paxlovid.

Glad you are making some improvement @josepdelafuente. It will be great if your own immune system deals with it.
 
Last edited:
Two negative tests this morning, today is the first day I've tested negative since last Weds 22nd.
Still feeling pretty ill though! Will be interesting to see how long it takes to feel "recovered" from this instance covid and how long it takes to get back to my "normal" ME capacity..
 
JemPD said:
based on anecdotal reports i havent yet heard of a PwME who has had covid & it not left them worse than they were before.
That is what scares me,
Click to expand...

Jonathan Edwards said:
Yes @JemPD, you have laid it out clearly. Things aren't easy but maybe it helps to tease things out sometimes. We need more documentation just of the natural history of ME. Which is why I keep telling the government working party that we need dedicated academic clinicians who see PWME year in year out and base research on knowing what things are really like.
Click to expand...

My entire, decades-long experience of ME has been that if I get an additional viral infection, and it's bad, it can significantly worsen my condition for years. The first infection I get made me feel under the weather; the next made me unable to work more than a couple of hours a day; the third put me in bed for eight years.

This is why I've continued to shield against Covid, even though I've had all the vaccinations. I can't afford to get made permanently worse.

I thought this was a well-recognised phenomenon with ME and it's why I've been surprised that PwME haven't been on any sort of Covid-vulnerable list, including for Paxlovid.

But your comments make me wonder whether it isn't, Jo!

As other people have said on this thread, PwME not being on a Covid-vulnerable list has meant that those of us who are housebound and live alone had a frightening time of not being in the priority list for having food delivered, for example.

If we have this extra vulnerability (and I believe we do), what do we need to do as a group to establish it?
 
Sasha said:
If we have this extra vulnerability (and I believe we do), what do we need to do as a group to establish it?
Click to expand...

We need data to support this, if we are going to get governments to change policy.

I suspect like reactions to vaccinations, where some of us have significant adverse responses and others do not and like susceptibility to infection, where some of us feel we get everything going and others feel they never get any bugs, we might see variation with some who suffer adverse responses to subsequent viruses and with some who don’t.

Although it would not be conclusive in any way would it be worth conducting a poll here?

Would we want to know how often subsequent viral infections trigger relapses or how long relapses last?

For example some six years into my ME a dose of seasonal flue triggered a major relapse in my ME. It was significant in that it left me largely bed-bound for several years, and indeed I never recovered to the level I was at when the flue struck, however with subsequent ups and worse relapses I can not now say whether I am still suffering from the effects of the influenza or not. However in the thirty years of my ME that dose of flue was the only presumed virus that I feel I can with reasonable confidence say caused a significant relapse. Unfortunately it is hard to say how many infections I have had in that time, given it is difficult to distinguish PEM from mild infections and on the whole I have since the flue triggered relapse avoided situations, particularly in the flue season, where I might be at risk from infection.

I wonder if the first step would be a poll on how long any negative response to a virus has lasted:

Since the onset of your ME, have a subsequent virus or viruses resulted in a worsening of your ME and/or the appearance of additional symptoms? How long has this effect lasted?
  • My ME has not been adversely effected by any subsequent virus
  • My ME has been adversely effected, lasting up to a month
  • My ME has been adversely effected, lasting up to two months
  • My ME has been adversely effected, lasting up to six months
  • My ME has been adversely effected, lasting up to a year
  • My ME has been adversely effected, lasting up to two years
  • My ME has been adversely effected, lasting more than two years
Any thoughts of the value or format of such a poll?
 
Peter Trewhitt said:
We need data to support this, if we are going to get governments to change policy.

I suspect like reactions to vaccinations, where some of us have significant adverse responses and others do not and like susceptibility to infection, where some of us feel we get everything going and others feel they never get any bugs, we might see variation with some who suffer adverse responses to subsequent viruses and with some who don’t.

Although it would not be conclusive in any way would it be worth conducting a poll here?

Would we want to know how often subsequent viral infections trigger relapses or how long relapses last?

For example some six years into my ME a dose of seasonal flue triggered a major relapse in my ME. It was significant in that it left me largely bed-bound for several years, and indeed I never recovered to the level I was at when the flue struck, however with subsequent ups and worse relapses I can not now say whether I am still suffering from the effects of the influenza or not. However in the thirty years of my ME that dose of flue was the only presumed virus that I feel I can with reasonable confidence say caused a significant relapse. Unfortunately it is hard to say how many infections I have had in that time, given it is difficult to distinguish PEM from mild infections and on the whole I have since the flue triggered relapse avoided situations, particularly in the flue season, where I might be at risk from infection.

I wonder if the first step would be a poll on how long any negative response to a virus has lasted:

Since the onset of your ME, have a subsequent virus or viruses resulted in a worsening of your ME and/or the appearance of additional symptoms? How long has this effect lasted?
  • My ME has not been adversely effected by any subsequent virus
  • My ME has been adversely effected, lasting up to a month
  • My ME has been adversely effected, lasting up to two months
  • My ME has been adversely effected, lasting up to six months
  • My ME has been adversely effected, lasting up to a year
  • My ME has been adversely effected, lasting up to two years
  • My ME has been adversely effected, lasting more than two years
Any thoughts of the value or format of such a poll?
Click to expand...
I've no energy to check, but I feel certain MEA ran that poll regarding covid.
they may have done it for general viral infections too
 
JemPD said:
I've no energy to check, but I feel certain MEA ran that poll regarding covid.
they may have done it for general viral infections too
Click to expand...

I could not find the British MEA poll, but can’t now remember if it was a poll or if they just asked people to let them know if Covid-19 impacted on their ME.

Wasn’t one of the American based charities looking at this too?
 
Peter Trewhitt said:
I could not find the British MEA poll, but can’t now remember if it was a poll or if they just asked people to let them know if Covid-19 impacted on their ME.

Wasn’t one of the American based charities looking at this too?
Click to expand...
Bragée ME Center in Sweden sent out a questionnarie to all their patients in 2021 or 2022. As far as I know, they still haven't published any results.

ETA: The study started in December 2021, and included questions about reactions to covid vaccines as well.
 
Last edited:
josepdelafuente said:
Two negative tests this morning, today is the first day I've tested negative since last Weds 22nd.
Still feeling pretty ill though! Will be interesting to see how long it takes to feel "recovered" from this instance covid and how long it takes to get back to my "normal" ME capacity..
Click to expand...
I'm curious if anyone can offer any insight / explanation - as mentioned today is the first day I tested negative for a week or so (did two tests which both came back negative), but in terms of symptoms I probably actually feel worse today than I did yesterday. I know this isn't unusual but it makes me curious about what's actually going on in the body... or are we basically immediately into familiar "what is ME" territory already if I apparently have cleared the virus but still have lots of symptoms..
 
An otherwise very healthy family member tested positive and had symptoms for 2 weeks, then fully recovered. I think the time symptoms last varies a lot.
 
You must log in or register to reply here.
Back
Top Bottom