post-exertional malaise

Join the Conversation on
post-exertional malaise
400 people
0 stories
16 posts
Explore Our Newsletters
What's New in post-exertional malaise
All
Stories
Posts
Videos
Latest
Trending
Post

Ampligen update: bad news for all of us w/ M.E. and Long Covid

I'm just so freaking worn out. Here's the latest re the current Ampligen trial.

For those who might not know, Ampligen is often referred to as "the Lazarus drug" b/c in its previous trials it has effectively combatted Post-Exertional Malaise.

However, it can sometimes cause liver damage. As such, a debate has swirled around Ampligen for decades and, indeed, some Myalgic Encephalomyelitis advocates think the risk of liver damage has been over-interpreted.

After a particularly horrid week, I was so hoping we'd all get some good news re the Ampligen trial. And I still believe it could be modified in a way that maintains its efficacy w/out causing severe side effects.

I do know that there's a massive financial incentive to develop a long-lasting treatment for both Myalgic Encephalomyelitis and for Long Covid b/c w/ tens of millions of us out of commission in the U.S. alone, well, someone's gonna get rich if they can treat us.

Damn post-viral illnesses straight to hell.

Day 54 of 365

AIM’s ampligen stumbles in Phase II trial

#MyalgicEncephalomyelitis #longcovid #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #PostexertionalMalaise #Ampligen #Disability #Ampligen

AIM’s ampligen stumbles in Phase II trial

AIM’s Ampligen failed to meet its primary endpoint in the Phase II trial in people with post-Covid fatigue.
6 reactions 2 comments
Post

Today I unloaded and loaded the dishwasher, walked the dog, and folded the laundry--where's my parade?

I've had Myalgic Encephalomyelits for 32 and a half years and I never stop hating parsing out my life in the tiny increments that my body allows. And I know I'm one of the lucky ones.

Everything listed in the title feels like a huge accomplishment--and under the circumstances, it is, really--but it also feels like bullshit b/c, seriously, why did I study so hard and work so diligently only to have "putting the towels away!" become my giant accomplishment?

I loathe this illness with the heat of a thousand suns.

Day 27 of 365 (I had to take the last week off b/c I was too sick to write here, in a freaking blog and, also, had seemingly a million physician appointments. "Argh!" and other pirate noises.)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #PostexertionalMalaise

17 reactions 3 comments
Post

How to deal with PEM “tired and wired”?

I have dysautonomia and pretty bad PEM sometimes. I don’t feel the chronic fatigue however my energy span runs out quicker and if I overdo it the crash happens. Because of my dysautonomia I am prone to tachycardia and palpitations. I would describe PEM as tired and wired instead of just tired/drowsy. I tried using ubiquinol or coenzyme q10 but they all caused palpitations and jitterness even after one dosr which was frustrating. I am taking ivabradine and as needed metoprolol and occasional xanax.
Any suggestions on how I can further cope with this and any supplements/lifestyle changes that have helped? #ChronicFatigueSyndromeampME #PostexertionalMalaise #PEM #Dysautonomia #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

3 comments
Post

have you tried to get student loan forgiveness without SSA or SSDI?

Please say if it was or wasn’t successful first.
I am sure I’m not the only person who considered it. I haven’t applied for SSA or SSDI because it wouldn’t be worth it.
I had to do medical withdrawals (fibromyalgia-related, PTSD, & other medical issues) back when I was trying to complete my degree. I was unable to. On top of all the medical stuff I supposedly didn’t have learning disabilities until I was an adult (or the symptoms weren’t severe enough until then) so I didn’t have the coping mechanisms that are taught when younger. If you didn’t know, it is ridiculously expensive to get the testing for learning disabilities. Since I was an adult, I had to find a place by myself that did testing (though neither medical or psychiatric insurances help pay for it) and somehow be able to pay thousands of dollars to be tested. I was unable to get accommodations for the symptoms that came along with my fibromyalgia.
If you are lucky enough not to know this, you still owe money when you have to take medical or compassionate withdrawals.

I feel like my student debt is holding me back. It’s already hard enough financially with medical issues.... I am trying to get healthier & be able to do more but financially it’s so rough. I didn’t complete my degree so that limits job availability. Plus I hope to find a flexible schedule remote job from home. I can’t handle the driving. All income-driven repayment is doing is increasing how much I owe.

Please share your stories...even if it’s just something you have been considering. I just ask you first say if you tried whether it was successful... or if you are in the process or thinking about it.

#Dysautonomia #Complex Post Traumatic Stress #PTSD #PostexertionalMalaise #Arrhythmia #PosturalOrthostaticTachycardiaSyndrome #InappropriateSinusTachycardia #ChronicIllness #MyalgicEncephalomyelitis #ChronicPain #ChronicHeadaches #ChronicMigraines #Migraine #Fibromyalgia #avnrt #avnoderentrenttachycardia #Tachycardia #SinusTachycardia #MyofascialPainSyndrome #LearningDisabilities

18 comments
Post

Have you tried a weighted blanket? Do you think it helps w/ your PEM or daily soreness?

have you tried a weight blanket? do you notice it helps post-exertional malaise symptoms? or just daily issues?

#PostexertionalMalaise #Postexercisemalaise #Fibromyalgia #MyalgicEncephalomyelitis #Dysautonomia

8 comments
Post

How would you describe what living w/ #Fibromyalgia is like to somebody?

It’s difficult trying to explain what living with fibromyalgia is like. Family and friends tend to not understand.
I am interested in anybody who has had success.

How can we explain to others what it can be like?... especially what it’s like with a flare-up, #PostexertionalMalaise , or etc.

A long time ago I remember seeing a way somebody explained it using an example of what it would feel like for somebody not ill to do intense exercising while having the flu and other stuff.

Do you have to break it down to diff symptoms that come w/ fibro? Fatigue, pain, sensitivity, fibro fog, etc? 🤔

6 comments
Post

Has anybody w/ #Fibromyalgia tried the Apple Watch 4?

I tried the first Apple Watch when it came out but it felt like my skin was burning. I don’t know it fit was the lights?
I want to track my heart rate (ECG) for my #InappropriateSinusTachycardia #Dysautonomia ... see if I can prevent my #PostexertionalMalaise as much as possible.

2 comments