Are people with ME/CFS immunocompromised?

[Sasha]

Copied post and some following posts moved from A proposed mechanism for ME/CFS...


If this theory is correct, would PwME be considered as immunocompromised? Or if we were on one of the proposed treatments?

I'm wondering whether that classification would help us get some kind of special treatment in GP surgeries, hospitals etc. to protect us against infection as standard, or whether that doesn't happen for anyone these days. For years, I've had to phone ahead to make protective arrangements but it's always difficult.

 

[Jonathan Edwards]

Copied post

If this theory is correct, would PwME be considered as immunocompromised? Or if we were on one of the proposed treatments?

I don't know of any good reason or evidence for thinking pwME/CFS are immunocompromised. That was an idea that came from comparing it to AIDS and calling it CFIDS I think. I don't see any basis for it much. Treatments might compromise, though.

 

[Kitty]

I'm wondering whether that classification would help us get some kind of special treatment in GP surgeries, hospitals etc. to protect us against infection as standard, or whether that doesn't happen for anyone these days.

It's hard to know what they can do realistically. They're public buildings, usually busy ones, and have lots of poorly people and staff looking after them.

If we wanted all clinicians to wear masks, I'm guessing we'd have to ask regardless of what our medical records say. Even in cancer units where they're administering drugs to kill off large parts of people's immune systems, masking doesn't seem to be standard (though my, umm, expertise only runs to three of them).

It's possible the reason is that one person masking doesn't make any difference. The patients still have to leave the treatment room afterwards, passing a stream of unmasked people as they go, then travel home to partners, kids, carers, friends, etc.

 

[Sasha]

I don't know of any good reason or evidence for thinking pwME/CFS are immunocompromised. That was an idea that came from comparing it to AIDS and calling it CFIDS I think. I don't see any basis for it much. Treatments might compromise, though.

Would the fact that viral infections can make our ME/CFS much worse, possibly permanently, due to a weirdness with our immune systems not be a reason to be considered immunocompromised, or is being immunocompromised a matter of being at risk of death from exposure to infection?

 

[Jonathan Edwards]

Would the fact that viral infections can make our ME/CFS much worse, possibly permanently, due to a weirdness with our immune systems not be a reason to be considered immunocompromised

I hear equally of members talking of being worse or better with infections, but immunocompromised is usually reserved for conditions where the microbe cannot be controlled. Lots of other diseases may shift gear with infections and we don't call that being immunocompromised.

 

[Sasha]

I hear equally of members talking of being worse or better with infections,

If you mean you hear that that is happening to PwME with equal frequency or in equal measure, it would surprise me enormously. I've been made temporarily better - once, forty years ago, early in my ME/CFS - by what appeared to be a cold, and as soon as my nose started running, I felt amazing, but the boost went when the cold went. Every other viral infection that I've been aware of has made me worse, and some have made me much, much worse, for years on end. Ever since I got ME/CFS I've done everything I can to avoid viral infection, for that reason. It's why I'm still shielding from Covid five years on and expect to have to shield for the rest of my life.

but immunocompromised is usually reserved for conditions where the microbe cannot be controlled. Lots of other diseases may shift gear with infections and we don't call that being immunocompromised.

Covid, flu and other viruses and presumably can't be controlled - is that not what you mean?

 

[Jesse]

I've mainly heard that people feel better on the onset of an infection and maybe during if it was a very mild one (although for me this is not a very noticeable effect). Having a flu or any infection that causes a fever usually wipes me out for 2+ weeks and relatively often leads to a decline in function.

 

[Kitty]

Would the fact that viral infections can make our ME/CFS much worse, possibly permanently, due to a weirdness with our immune systems not be a reason to be considered immunocompromised

I wonder if we should steer well clear of the term immunocompromised. I don't think anyone will treat it seriously.

I asked my GP if I could have the 'flu jab every year, because 'flu had made me so ill I was off work for five months and it took a year to get back to where I'd been. She thought that was sensible, and added it to the header on my notes.

That kind of approach, where you talk about your experience of infection making your ME/CFS symptoms much worse—rather than invoking a condition you probably don't have and might not require some accommodations even if you did—might be more successful?

 

[Sasha]

I wonder if we should steer well clear of the term immunocompromised. I don't think anyone will treat it seriously.

I asked my GP if I could have the 'flu jab every year, because 'flu had made me so ill I was off work for five months and it took a year to get back to where I'd been. She thought that was sensible, and added it to the header on my notes.

That kind of approach, where you talk about your experience of infection making your ME/CFS symptoms much worse—rather than invoking a condition you probably don't have and might not require some accommodations even if you did—might be more successful?

That's what I've always done, but if we actually are immunocompromised and there comes a point where we can prove it and everyone accepts it, I was wondering what the situation would be. I'm certainly not intending to raise the issue in the healthcare system until that point!

 

[hotblack]

I think the “yes you are really quite ill with a real thing” will change how we are treated quite noticeably, even with people who are not full on ME/CFS deniers, just ignorant.

But people will always vary. And like @Kitty said things like masking vary enormously. I just ask people to do so when they come to see me, but it’s easier to control one room than the world.

And despite having similar feelings and experiences to being ill as you @Sasha there seems no evidence of being immunocompromised. This paper is quite the reverse!

 

[MrMagoo]

I wonder if we should steer well clear of the term immunocompromised. I don't think anyone will treat it seriously.

I asked my GP if I could have the 'flu jab every year, because 'flu had made me so ill I was off work for five months and it took a year to get back to where I'd been. She thought that was sensible, and added it to the header on my notes.

That kind of approach, where you talk about your experience of infection making your ME/CFS symptoms much worse—rather than invoking a condition you probably don't have and might not require some accommodations even if you did—might be more successful?

I get the flu jab under the WHO “neurological” classification being the reason I’m entitled. I’m such an anti-recovery activist!
It’s probably not even neurological is it.

 

[Holinger]

I have severe ME/CFS and nothing else. My white blood cells count is always in the level BELOW the normal range and my Dr has a worried look when he looks at the screen. No one has really been able to say what this means if anything. Not sure if this would be immunocompromised.

 

[Kitty]

Not sure if this would be immunocompromised.

I don't know if it's a thing that can objectively be measured.

Some of my cell counts are always down due to the meds I take, so I'm treated for things like vaccine priority as if I'm immunocompromised. I don't appear to be, though; at least, I have no more trouble than normal shrugging off common infections like head colds, Covid, etc.

It seems to be quite complex, and no one can predict reactions to infection with much certainty.

 

[Mij]

I asked my new dentist and assistant to wear N95 masks and run an air purifier during my visits b/c my dentist was coughing when I was in the chair the first visit. Yesterday I was very pleased that they respected my concerns and wore N95 mask and had a purifier running in the room. I told them I had a weaken immune system and that I've been disabled with CFS for 33 years.

My lymphocytes are all way below normal, the worst being my CD8 counts, and I've always recovered from viral infections for the last 25 years. I don't tell people I'm immune compromised.

 

[Binkie4]

I don't know if it's a thing that can objectively be measured.

Some of my cell counts are always down due to the meds I take, so I'm treated for things like vaccine priority as if I'm immunocompromised. I don't appear to be, though; at least, I have no more trouble than normal shrugging off common infections like head colds, Covid, etc.

It seems to be quite complex, and no one can predict reactions to infection with much certainty.

At the beginning of covid in 2021 just after the first vaccinations, Mr B and I had our response to the vaccination measured in a private local lab. We were about to go on holiday with our grandchildren close by, and knew they would be in and out of our apartment all the time after mixing with other friends. Until then we had always seen them outside for BBQs etc so we wanted to understand our position.

Samples were taken and later we were given our results. I can't remember what the scale stood for but Mr B's score was 20 plus and mine was 3.5. They repeated mine at no cost to be sure. Same result. Results went to our GP who said I was immune suppressed. So I couldn't just relax. We carried on meeting outside even on a rainy Xmas day.

 

[Peter T]

Anecdotally some people with ME report getting every bug going and others report getting none or at least very few.

My personal experience has been that I have had periods when I seem to get lots of viral infections and other times when I get none, though now being largely housebound and because of Covid being very virus aware I have very little exposure to possible sources of infection. Also things are potentially confusing in that it can be hard to distinguish PEM from the early stages of a viral infections.

Unfortunately we lack good data to say if people with ME are more likely to catch an infection if exposed than the general population. So we can not say with any certainty that in general people with ME are immunocompromised or immunosuppressed. However I suspect we are on stronger ground in suggesting that we are at higher risk of suffering long term adverse consequences from a viral infection should we catch one.

This would suggest that though it is currently impossible to assert with confidence that we are in general immunocompromised, despite some research evidence of immune abnormalities, it makes sense to be treated and/or to behave as if we were because of the potential negative consequences should we develop a viral infection.

 

[Mij]

My personal experience has been that I have had periods when I seem to get lots of viral infections and other times when I get none, though now being largely housebound and because of Covid being very virus aware I have very little exposure to possible sources of infection. Also things are potentially confusing in that it can be hard to distinguish PEM from the early stages of a viral infections.

Unfortunately we lack good data to say if people with ME are more likely to catch an infection if exposed than the general population. So we can not say with any certainty that in general people with ME are immunocompromised or immunosuppressed. However I suspect we are on stronger ground in suggesting that we are at higher risk of suffering long term adverse consequences from a viral infection should we catch one.

Some of us live alone and don't have much exposure with people so don't 'catch' anything from anyone. It's like our immune system isn't keeping things in check. We get reactivation of viruses or whatever is going on with our immune system to make us feel like it's 'viral'. And yes it's difficult to distinguish it from PEM at first, but as it progresses, it's obviously not PEM. Sometimes (in my case) just going for out for a walk feeling particularly good causes an immune reaction the next day and I feel achy/sore exhausted.

It's allergy season here and I have to keep all windows closed b/c it compounds everything else my immune system is dealing with.