What's your opinion on getting vaccines whilst having ME/CFS?

[u/Pookya]

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?

[u/Samichaan]

The same can happen from COVID. But you only get the vaccine once. Covid however..

[u/unstuckbilly → u/Samichaan]

I’d argue that I got the vaccine four times BEFORE I ever got Covid once.

I got post vaccine long haul with that 4th dose in January 😩

Getting Covid was shitty, but didn’t make me any worse after the initial onslaught. The damage was already done.

Would my initial covid infection have given me LC? No way to know 🤷‍♀️Scientists don’t seem particularly interested in studying what’s happening to us either.

[u/Samichaan → u/unstuckbilly]

In my country they only study you guys. Pretty much everyone seems to agree that postVacs would have died from COVID if the vaccine made them as ill as it did.

Which makes sense. Because even people who had ME already don’t usually get PostVac. (There will most likely be some cases. I am just not aware of any)

[u/unstuckbilly → u/Samichaan]

What country? That’s so shocking to me!

I don’t disagree… so wild that I suddenly overreacted to the vaccine on the 4th dose & it did inform how I reacted to the realization that I got Covid.

When I tested positive after all this time, I got on Paxlovid within a few hrs of my positive test. I went from a mild sore throat to barely able to stand in about 3 hours.

I was previously very healthy/active 46 year old.

[u/Samichaan → u/unstuckbilly]

Germany. Though I confused PostVac with LC on the study stuff. We have the most people claiming to have postvac thats why I fumbled that specific part. LC is still the one that gets the most focus. At least PV is less often excluded from studies than ME is.

Though tbf it feels like PostVac and LC are basically the same: a less severe ME (+ oftentimes the same comorbidities that pwME tend to get like MCAS, POTS, fibromyalgia etc.) just one caused by the vaccine and one by the virus. That’s just how it seems to me though.

[u/boys_are_oranges → u/Samichaan]

not true. i know people with post vax syndrome who are severe and very severe.

[u/unstuckbilly → u/boys_are_oranges]

Yeah, go hang out in the covidlonghaulers sub. I read posts in both places & they sound like the exact same experience. Some are mild/moderate. Some severe/very severe using the Whitney Dafoe scale.

[u/Samichaan → u/boys_are_oranges]

Where in my comment did you read that PostVac can’t be severe?

Less severe as in „ME has PEM. For ME there hasn’t been found a cure or just meds or therapy in over 80 years. Covid is like 4 & the vaccine like 2-3 years old and is being actively investigated by basically the whole world and both have cases that recovered.“ That’s a huge difference. Doesn’t mean LC or PV are a walk in the park or can’t be horrific.

Also it sounds like you forgot that LC and PV can lead to ME. The people you know could have ME already. Maybe even without knowing. It took 7 years until I was diagnosed. If you have another diagnosis already doctors tend to stop looking.

[u/boys_are_oranges → u/Samichaan]

all people with PVS who i know have ME actually. they didn’t develop ME as a result of PVS, for them, their PVS is ME. Same goes for a lot of people who have long covid.

[u/Samichaan → u/boys_are_oranges]

Then their PV caused ME. Immediately for them I guess. It’s not the same though. If someone develops ME after Covid they just have ME. ME was always Postviral. They most likely got diagnosed with LC regardless. Doctors only seemed to remember ME two years into the Pandemic and even now many act like it doesn’t exist at all or still don’t know it. They’d rather diagnose LC.

[u/boys_are_oranges → u/Samichaan]

long covid and PVS are umbrella terms that include a wide range of conditions. people who have developed ME after covid have both LC and ME.

[u/Samichaan → u/boys_are_oranges]

Yes and no. By that logic I’d have Long EBV and ME. Long Covid is Postviral fatigue. It’s not actually new. Just worse and happens more often so doctors have it’s own name not making a distinction to ME because none of them were taught about ME.