• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Turned down for booster

Messages
39
I am in New Mexico and the registration for vaccine asks if you are immuno compromised. I consider myself to be so I checked it and listed my condition as CFS/ME. With my first set of shots it was no issue and I got them a little bit earlier due to this.

I was contacted by the state to schedule a booster shot and I did. I have been very unwell so it took great effort to drive the 30 or so minutes to Walmart. I told them I had cfs/me and how sick I was and had been disabled for years and they said I don't qualify for being immuno compromised. It just felt like another slap in the face trying to fight for recognition. I could have argued but I don't have the energy.
 

Jyoti

Senior Member
Messages
3,373
So sorry @Spanky88. It is absurd how many of those slaps we end up being on the receiving end of. And of course all of us here understand just what is entailed in driving 30 miles to WALMART. The lights inside, the energy, the overwhelm after the drive. To end up with nothing after that expenditure is so discouraging. I am sorry.
 
Messages
39
So sorry @Spanky88. It is absurd how many of those slaps we end up being on the receiving end of. And of course all of us here understand just what is entailed in driving 30 miles to WALMART. The lights inside, the energy, the overwhelm after the drive. To end up with nothing after that expenditure is so discouraging. I am sorry.

Thanks it was discouraging. The lady was looking at me really weird I think because I am middle aged and don't look ill i guess. They gave me a weird vibe. Just another reason for me to hate Walmart. I rarely ever go there for anything ever when able.
 

belize44

Senior Member
Messages
1,662
Thanks it was discouraging. The lady was looking at me really weird I think because I am middle aged and don't look ill i guess. They gave me a weird vibe. Just another reason for me to hate Walmart. I rarely ever go there for anything ever when able.
I despise Walmart and never go there for anything if I can help it. The fact that you had a bad experience there doesn't surprise me at all. Is there any place else you could go to for the booster shot?
 
Messages
39
I despise Walmart and never go there for anything if I can help it. The fact that you had a bad experience there doesn't surprise me at all. Is there any place else you could go to for the booster shot?

Yeah I hate Walmart for many reasons. Just a horrible corporation. I can try to reschedule somewhere else and I think the booster shot opens to everyone in not too long. It's just the fact that I am tired of having to fight to have adequate treatment and respect for my condition.
 

Rufous McKinney

Senior Member
Messages
13,249
I can try to reschedule somewhere else and I think the booster shot opens to everyone in not too long. It's just the fact that I am tired of having to fight to have adequate treatment and respect for my condition.

I went thru Rite Aide and liked the general scene. However, boosters are different.

Frankly- why tell anyone like that you have ME CFS? Given what we know, thats like speaking Russian.

My second shot came with a lot of questions which, had i answered them honestly, looked like i"d get sent back to my doctor, rather than receive Jab 2. So I said- I am immune compromised but I have conferred with my Primary doctor and I am to get this shot.

So I got the shot. The pharmacist- had his own issue he shared with me, given I asked questions.

I asked if he received "support" there at work, without a colon. This guy spent a year in the hospital. I felt terrible for him.

but ME CFS does not compute in the general world. Fighting for its recognition is worth it, but pick your battles.
 
Messages
39
I went thru Rite Aide and liked the general scene. However, boosters are different.

Frankly- why tell anyone like that you have ME CFS? Given what we know, thats like speaking Russian.

My second shot came with a lot of questions which, had i answered them honestly, looked like i"d get sent back to my doctor, rather than receive Jab 2. So I said- I am immune compromised but I have conferred with my Primary doctor and I am to get this shot.

So I got the shot. The pharmacist- had his own issue he shared with me, given I asked questions.

I asked if he received "support" there at work, without a colon. This guy spent a year in the hospital. I felt terrible for him.

but ME CFS does not compute in the general world. Fighting for its recognition is worth it, but pick your battles.

Honestly I wasn't prepared for a issue because the first place I went I told them and they gave me zero issues. Next time though I will just say I have an autoimmune disease and on immunosuppressive drugs or something. Keep it real simple for them.
 

Rufous McKinney

Senior Member
Messages
13,249
Honestly I wasn't prepared for a issue because the first place

well thats so typical for us....

here lately, I find being vague is far more clear. Whats interesting is when we are vague, they often do not ask for more specifics (like what is this "neuroimmune" condition you have?) If they asked, I'd use ME as i never say CFS. thats the guarantee you won't get any help, or you'll hear all about how Oh yes, had that, got over it.

Technically my diagosis is SEID. Which NOBODY has ever heard of,
 
Messages
39
well thats so typical for us....

here lately, I find being vague is far more clear. Whats interesting is when we are vague, they often do not ask for more specifics (like what is this "neuroimmune" condition you have?) If they asked, I'd use ME as i never say CFS. thats the guarantee you won't get any help, or you'll hear all about how Oh yes, had that, got over it.

Technically my diagosis is SEID. Which NOBODY has ever heard of,

It's still bullshit. It's ridiculous we have to apply strategies to get help. I feel like I have to play a role in every medical setting and even for people I know. Just tired of the game but I get where you are coming from.

I had to look up SEID too. I actually never heard of of it described that way either.
 
Last edited:

Rufous McKinney

Senior Member
Messages
13,249
I had to look up SEID too. I actually never heard of of it described that way either.

I've never even had the chance to ask my doctor why he loves the term Systemic Exertion Intolerance Disease.

He lept up and down, after my 5 minute diagnosis.

But heck at least I've got a REAL disease not no stinking Syndrome....
 
Messages
39
I've never even had the chance to ask my doctor why he loves the term Systemic Exertion Intolerance Disease.

He lept up and down, after my 5 minute diagnosis.

But heck at least I've got a REAL disease not no stinking Syndrome....

It's definitely a better description. CFS is a real lame name it needs to be changed in my opinion. People I tell, "say geeze I am tired all the time. I didn't know you could get disability for that. "
 

hapl808

Senior Member
Messages
2,052
It's still bullshit. It's ridiculous we have to apply strategies to get help.

CFS is a terrible name and myalgic encephalomyelitis is too long and not helpful. We need the branding people who worked on multiple sclerosis. That's some branding.

Stupid that we have to apply strategies to get help, but true with medical professionals, friends, etc.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I am in New Mexico and the registration for vaccine asks if you are immuno compromised. I consider myself to be so I checked it and listed my condition as CFS/ME. With my first set of shots it was no issue and I got them a little bit earlier due to this.
I am also in New Mexico and plan to wait until I come up in the ‘normal’ population in October—8 months after my last vaccination. I got mine through the Presbyterian system and they were wonderful.
 
Last edited:

BrightCandle

Senior Member
Messages
1,147
CFS was chosen as a renaming to diminish the condition, it wasn't am accident. There is a reason many call it by its original name termed by the doctors who dealt with it during an outbreak in their hospital based on its obvious symptom. Frankly I don't care what its called, but this systemic mistreatment just generally really pisses me off and covid19 has once again highlighted the level of prejudice targeted at us.
 
Last edited:

Rufous McKinney

Senior Member
Messages
13,249
CFS is a terrible name and myalgic encephalomyelitis is too long and not helpful. We need the branding people who worked on multiple sclerosis. That's some branding.

totally agree.

MS nabbed the two letter illness name starting with "M". Most folks have some at least vague idea that you don't want to have MS.

CFS is: i'll never say it, not ever- its the illness everybody tells me they had and recovered from. Since I'm not recovered from anything, 58 years later at least, you'll never hear the term from me. Its clearly inapplicable.

Next we have the famous viral illness that got major attention. It got the triple acronym: AIDs or HIV. Either of those, well you can SAY the acronym AIDs and HIV rolls off the tongue it seems.

So to brand it better, we need to be able to SAY it, and have it be distinct yet simple. ME sounds like me, a pronoun or M E, and either way, it lacks a distinctive quality.

To just finish my opining, technically I have an SEID diagosis. Some don't even recognize that around here.

Since it seems I no longer see other people, its simply not come up in, oh several years- the opportunity to utter that I have SEID.

It does roll off the tongue in a particularly way when you say it out loud, and it ends in Disease. And a clear statement Exertion Not Tolerated. I figure if I say it, to someone, I'll look the part. It will compute, finally.

And somebody will actually acknowledge it all.

But I am not holding my breath.
 
Messages
39
I am also in New Mexico and plan to wait until I come up in the ‘normal’ population in October—8 months after my last vaccination. I got mine through the Presbyterian system and they were wonderful.

Is this still happening due to the FDA recommendation not to give everyone boosters except the elderly and those who are "immuno compromised"?
 

Mouse girl

Senior Member
Messages
578
Yes, it's always a bummer when this kind of thing happens. I also say I have a neuroimmune illness. When they ask, i say generally: no one's heard of it or say the ME name in word form if they are curious.

My doc told me to get the booster at 6 months instead of 8. I will get it but it's funny since I'm so busy now and really struggling, i worry if it will set me back. I'm just having such a hard time so much sets me back and I can't afford to get set back because I have so much to do. Not that anyone can afford to get set back but if I was back in my good, stable environment, i could have been ok being set back and been able to rest and recover. Now.....ekkk!

Best of luck getting your booster next time. Try another place for sure. I hope you can get it without any questions.
 
Messages
39
Yes, it's always a bummer when this kind of thing happens. I also say I have a neuroimmune illness. When they ask, i say generally: no one's heard of it or say the ME name in word form if they are curious.

My doc told me to get the booster at 6 months instead of 8. I will get it but it's funny since I'm so busy now and really struggling, i worry if it will set me back. I'm just having such a hard time so much sets me back and I can't afford to get set back because I have so much to do. Not that anyone can afford to get set back but if I was back in my good, stable environment, i could have been ok being set back and been able to rest and recover. Now.....ekkk!

Best of luck getting your booster next time. Try another place for sure. I hope you can get it without any questions.

Thanks, yeah I am definitely going to change my approach to getting it this time. Give some different answers and go to a different location.

I understand your concern, my health is really on edge too I am in a crash. So that thought has crossed my mind if it's really a great idea. I am just scared of getting a break through infection with this thing because I am so weak. It's definitely a catch 22.
 

maddietod

Senior Member
Messages
2,859
I got my 3rd shot at CVS in Baltimore. I think the last choice for a qualifying illness was autoimmune disorder, so I checked that. The pharmacist checking me in also asked, and I gave the same answer. I was tired from the short walk over, hot from the same, and needed the bathroom...I used all of this to my advantage.