Is there anyone with M.E. and CLL ?

[Greencyclist]

is there anyone especially in the UK , with Myalgic Encephalomyelitis. (M E ) and. CLL ? As you can see on my profile I was diagnosed with ME a long time ago and then in 2013 also with CLL. I am still on watch and wait but particularly interested if anyone with ME and CLL has had treatment as I am concerned as very very sensitive to most medications since ME . Also I have no antibodies to Covid despite three vaccines, so wondered if this is affected by ME as most CLLs on watch and wait do you have some antibodies.

[LeoPa]

Your case must be pretty rare. I do not have ME and I never checked my antibody levels after having three vaccines. With omicron they are unimportant anyways. It is the t cell based immunity that is more important but it is not checked easily

[Greencyclist in reply to LeoPa]

yes it does seem to be a very rare situation! Why is it different for omicron in terms of antibodies? I thought they were still pretty important. I am part of the University of Birmingham study and I’m hoping that soon they will publish something on T cell response. They obviously don’t give individual results. I had a private antibody test, But I would like to know my T cell response not sure if there is a private test? Does anybody know?

[LeoPa in reply to Greencyclist]

Omicron is very apt at avoiding antibodies. So much so that only sotrovimab is considered to be an efficient cocktail which can be used after infection and even that is less efficient than against the earlier variants. But the vaccines are still supposed to increase t cell immunity.

[MyCLLJourney in reply to LeoPa]

I'm from the U.S. and had meningo-encephalitis. Caused by my CLL. the white blood cells went up my spine. Still recovering. Im not sure if this is the version of E or not. It is extremely rare. I had chemo while I was in ICU for the E. I had R-CVP, which is the same meds needed for E (at least the R and C). At the time of treatment, I thought the dizziness was caused by the treatments because I'd have 1 to 2 days just before my next treatment where it wouldn't be as bad. But, now that treatment is over, I still have bad dizziness. I've also had to have IGHV infusions because of low IGG, which is also a treatment for E.

[LeoPa in reply to MyCLLJourney]

I am not familiar with that condition but I wish you the best of luck and a speedy recovery!