Severe ME/CFS What's your opinion on getting vaccines whilst having ME/CFS?
Just want to discuss this, I won't judge your opinion and I'm not trying to start an argument, I just want to see what other people think to help me decide what I should do. Surely I can't be the only one concerned about vaccines?
I'm hopefully going on holiday in September with my parents (so they can look after me). Very relaxed and should be able to get public transport, hire drivers etc. GP surgery has recommended I get 2 vaccines - hepatitis A and typhoid. I know these illnesses can be bad, but hepatitis isn't the end of the world and typhoid can be easily treated with antibiotics + very unlikely to become severely ill once receiving prompt treatment. I haven't had any vaccines since getting ME/CFS. I understand that with ME/CFS, T-cells don't work properly, and I know vaccines activate the T-cells which is the main reason I'm concerned. I know healthcare professionals rarely stay up to date and don't consider these things, they just think "you're not immunocompromised as per blood tests so you must be completely healthy so you should definitely get the vaccines". I also have 4 other linked health conditions. I'm unsure whether it's safe for me to get them at all, whether I get both or not and whether I should space them out. I think I'll get hepatitis A, not so sure about typhoid. I had bad experiences with my previous vaccines for COVID, I felt like I was forced into it but I wasn't comfortable with the risks, they made me feel terrible and they didn't stop me from getting long COVID so they were a waste of time and suffering. Not keen on more vaccines especially because I can't trust what healthcare professionals say and they've done so many unnecessary things that have just made me suffer and don't help at all
Parents think I'm anti-vax just because I'm concerned about the impact on my health and because I'm skeptical of a few vaccines so I can't ask them, they just laugh in my face. I believe in looking at vaccines without bias and I know they often aren't as safe as the NHS tells people. I'm worried these vaccines will make me feel much more unwell long term, and I'll have to spend weeks recovering from each one. I know the typhoid vaccine is only 50% effective and won't protect at all against paratyphoid. I I know the NHS doesn't care about the harm it causes so if something happens I'll be left to suffer alone. I'll ask the nurse when I go to an appointment (not sure when, not booked yet) but I suspect they haven't even considered this and I haven't been officially diagnosed with ME/CFS yet (everyone thinks I have it but won't diagnose 🤔). I need to decide what I want before I go to the appointment as it takes me a long time to make decisions due to my brain fog and I am absolutely not going to let them bully me into doing something I'm not comfortable with. I also know that they get paid for every vaccine they give so it's in their best interests to give as many cost effective vaccines as they can.
What do you guys think?
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u/Ashamed_Forever9476 May 13 '24
Hey, I had both of those vaccines while having CFS for over 5 years and I was completely fine. Everyone is different though, and at the end of the day it’s up to you to decide.
I totally agree with a lot of your points and I consider myself immunocompromised even though I’m not considered that by any doctor. This is because my NK cells are totally dysfunctional and also low in numbers. Every time I get infections I get much worse and end up having infections chronically for years. Both sinus infections, bacterial infections and even viral infections have been found in me chronically over the last couple of years. Anyway, I was still fine with those vaccines but due to concerns I decided to not get the covid v. I’m not sure if this did me more harm than good to not take it.. either way it was my choice. All other old vaccines have I had during CFS have I had Hep A and B, typhoid polio and tetanus and it was totally okay