[RD] Ask a Person with ME/CFS

How good at you at predicting what level of activity to avoid getting PEM? Have you ever done something that triggered PEM and then go "oh come on..."?
Pretty bad. Pretty good. Pretty bad. The range of permissible behaviour shifts without notice. Generally speaking, I am good in the moment of knowing if something will take up a dangerous amount of energy. But I am not good at listening to that.

Since my severity has been between housebound and bedbound for almost nine years now, the things that cause PEM can be anything. When I was bedbound, something as simple as getting up to get some food could have been enough to punish me the following day. What I feel these days is less incredulousness and more frustration that I'm being sidelined again.
 
Do you feel that people with ME/CFS often push themselves for fear that the doctor will consider them 'noncompliant' and drop them?
 
Do you feel that people with ME/CFS often push themselves for fear that the doctor will consider them 'noncompliant' and drop them?
It's not a fear so much as an inevitability. That's exactly what they do. The only reason I still have my GP is because I pay lip service to her yearly "You only feel this way because you're fat/not maintaining a strict sleep schedule/not maintaining a strict diet/not working/not exercising/not going out and doing things/not taking antidepressants, etc." sermon. The only reason I have this diagnosis is because I went over her head and got a rheumatologist to assess me.
 
Do you feel that people with ME/CFS often push themselves for fear that the doctor will consider them 'noncompliant' and drop them?
My GP is good. He reminds me to not overdo things. He's seen me passed out just by getting there.
He let's me do phone appointments.
There's still nothing he can do for me except some pain killers.
 
It's not a fear so much as an inevitability. That's exactly what they do. The only reason I still have my GP is because I pay lip service to her yearly "You only feel this way because you're fat/not maintaining a strict sleep schedule/not maintaining a strict diet/not working/not exercising/not going out and doing things/not taking antidepressants, etc." sermon. The only reason I have this diagnosis is because I went over her head and got a rheumatologist to assess me.

Oh, goody. A judgy, judgmental ableist for a doctor. What fun.

Reminds me of the nurses at the hospital telling me they'd get me "straightened out" and "back to normal" when I told them that I'm a night owl. I told them that for me, it IS normal, and there are lots of people who are naturally more alert in the evening/middle of the night, rather than in the morning/afternoon. My dad was like that.

It actually helped with my typing business, as the clients could drop stuff off in the afternoon and pick it up the next morning - I'd usually wake up at 1 pm, have something to eat and watch my soap opera, and get typing at 3 pm for as long as it took to get through the papers. Sometimes there were only a couple of assignments, but at other times there could be 7 or 8, and doing all that could take 12-15 hours, depending on the length and how easy the handwriting was to read. I'd try to go to sleep around 6 am and my grandmother would deal with the clients who came to pick up their papers (since my grandmother was a morning person, this worked out nicely).


And then there was the hospital stay for diabetes, and I was told to live a "completely sugar-free life." One doctor informed me that I could never have milk again, whereupon I pointed out that milk was always one of the choices I'd been allowed for meals. She made it very clear that she thought me too stupid to be able to measure out 120 mL for a portion (apparently forgetting that most people have these newfangled things called measuring cups) and that I should only drink water. How she expected me to eat cereal without milk is beyond me.

I told her I could not fathom only drinking water, and what else would she suggest.

Her answer: Coffee.

I said, "A doctor is pushing coffee?" :dubious:

When I told my regular doctor about this, she couldn't fathom it, either, and told me to go ahead and drink milk - as long as it wasn't too much, and to read the labels. 1% is fine.
 
In general, is the condition relatively stable, degenerative (keeps getting worse like PD), or has remission-relapses (like MS)?
 
In general, is the condition relatively stable, degenerative (keeps getting worse like PD), or has remission-relapses (like MS)?
It can be any of those things, though remission-relapses are more like significant changes in severity than absolute remission.
 
Reminds me of the nurses at the hospital telling me they'd get me "straightened out" and "back to normal" when I told them that I'm a night owl. I told them that for me, it IS normal, and there are lots of people who are naturally more alert in the evening/middle of the night, rather than in the morning/afternoon. My dad was like that.

I was like that in high school. Thinking back it's kind of astonishing that I graduated on 2 hrs of sleep every night and sleeping through my morning classes most days.
 
@Synobun do you think that with covid increasing the number of diagnoses of ME/CFS, there might be more research into the condition in the near future? I guess you kind of alluded to this in the OP but if you could go into it a bit more?
 
@Synobun do you think that with covid increasing the number of diagnoses of ME/CFS, there might be more research into the condition in the near future? I guess you kind of alluded to this in the OP but if you could go into it a bit more?
There's already significantly more research (because before we had basically none). Whether or not it will lead anywhere is up for debate. I lean toward no. The inhumane capitalist machine is too powerful. Even with the overall economic loss, their bottom line is improved by burying anyone with post-viral complications. This is a fight the conservatives are winning easily.
 
There's already significantly more research (because before we had basically none). Whether or not it will lead anywhere is up for debate. I lean toward no. The inhumane capitalist machine is too powerful. Even with the overall economic loss, their bottom line is improved by burying anyone with post-viral complications. This is a fight the conservatives are winning easily.

Well, that's ass.
 

In 1998, William Reaves, a director at the Centers for Disease Control (CDC), alleged deceptive Congressional testimony was given by officials at the agency concerning CFS research activities conducted by the organization; specifically, funds for programs intended for CFS research were diverted to other projects and not reported. He also stated he was retaliated against by his superior, Brian Mahy, after he reported the irregularities.[49][50]

A Government Accounting Office (GAO) investigation disclosed almost 13 million dollars for CFS research had been redirected or improperly accounted for by the CDC. The agency stated the funds were redistributed in order to respond to other public health emergencies. The director of a U.S. national patient advocacy group charged the CDC had a bias against studying the disease.[49]

Did you know about this? Do you think things might have changed any if they hadn't lost that funding?
 
AFAIK that's a fairly common issue regardless of the subject. But 13 million sounds disproportionately significant given the overall, comparative lack of funding for CFS research. If the question is if I think things would be different if society wasn't biased against us, then, well, yeah.
 
An employer just received notification that one of their employees requested accommodation due to ME/CFS and for some weird reason they decide to ask you about it. What do you suggest?
 
An employer just received notification that one of their employees requested accommodation due to ME/CFS and for some weird reason they decide to ask you about it. What do you suggest?
Let them work from home. Give them flexibility on their hours. There is almost no person with ME/CFS on the planet who can realistically and consistently tolerate 8-hour shifts again and again while leading a thriving life, even if they're mild. If possible, allow them to get their work done when they can, and not within a narrow range of hours.

If it's an office with amenities and they need the employee there, maybe set aside a quiet room. If it's a job that pays for perks like a gym membership, give them something like a massage therapy gift card or a supplement stipend instead. Generally speaking, if there are a ton of perks for abled people, disabled people should have access to an equivalent.
 
There is almost no person with ME/CFS on the planet who can realistically and consistently tolerate 8-hour shifts

This is why I no longer work as a Deputy Returning Officer. The shifts are a minimum of 12 hours, for the duration that that polls are open, plus more time for vote counting, paperwork, and cleanup. I can't guarantee on any particular day to be awake and alert for that many consecutive hours.

Yes, DROs get to have bathroom breaks, but it's frowned on if you take too many, or too long since you never know when someone will come to your station to vote.
 
Since you mentioned supplements, have you found any help with it?
 
Where did you get your excellent movie taste?
No i just wanted to add something positive..wasn't aware of your condition.

Do you sometimes feel moments of euphoria when something goes well?
When i was depressed that happened occasionally..i know it's not the same and sorry if a dumb question.
 
Since you mentioned supplements, have you found any help with it?
CoQ10 and CBD.

I also take additional vitamin C, calcium, and B12. I can't say I notice a tangible difference while taking them.

In the early days I had some benefit from rhodiola rosea, but I can't tolerate it anymore. I had some benefit from taurine but I stopped taking it when I became bedbound and never restarted.

There are other supplements I would like to try but it is simply too cost prohibitive. The CBD alone is over $100/mo.

I also take a lot of vitamin D but my body's ability to process/synthesize it is shot so this is mostly me pretending I'm doing something useful and lamenting that I can't just get a bolus IV of it once or twice a year. I'm pretty much permanently under 12 nmol/l, and the only time that was different was after getting an IV in the hospital.
 
Where did you get your excellent movie taste?
No i just wanted to add something positive..wasn't aware of your condition.

Do you sometimes feel moments of euphoria when something goes well?
When i was depressed that happened occasionally..i know it's not the same and sorry if a dumb question.
Sorry for the emo answer, but things usually do not go well.

I was pretty happy when I had a partner. But I've never been an internally motivated person and don't derive joy from the things that give other people joy, so my life largely revolves around distraction. Most of my time oscillates between disappearing in work hyperfocus or doing nothing at all.

Occasionally the fog or symptoms will lift for a short time and I'll believe that things are turning around. Then a couple days pass and I crash back to earth. C'est la vie. I make a lot of plans during those few days. I never learn.
 
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