List of ME/CFS Recovery and Improvement Stories

[Hip]

Additionally, now after taking my new medication for 3 weeks and really feeling the difference I can say that the SSRI Citalopram moved me up from moderate-severe to moderate.

Sounds interesting, thanks very much for posting you story. If these improvement maintain themselves in a few months time, I will add the story to the list.

Though it's not uncommon to see benefits like this disappear after a while. I had this with the antidepressant Wellbutrin: two weeks of feeling amazing, but then the drug just stopped working for me.

In the 1990s, when SSRIs were new, there were some ME/CFS patients who reported going into remission via SSRIs.

 

[Blazer95]

Absolutely reasonable. I would agree on waiting a Bit longer to See If its actually lasting.

Thanks for your answer

 

[leokitten]

Dear @Hip , I thank you whole heartedly for taking the big time and effort you put in this list and collecting information.

I think I can speak for most of us when I say that its really hard to collect and keep information with this disease because of its exhausting nature. You spare lots of us time we sometimes dont seem to have. Specially speeking for the ones that seem to progress getting worse and worse, wich was me before I came here.

I have looked at this list many times and have even considered some points as a take-away to talk them through with my doctor (I wouldnt recommend solo therapies, everyone has to decide theirself if they want to take this risk - I have took it aswell, just saying)

Additionally, now after taking my new medication for 3 weeks and really feeling the difference I can say that the SSRI Citalopram moved me up from moderate-severe to moderate. I am still mostly housebound but i would say it's 0.5-step improvement as I experience much less pain and can do minor household chores again wich I couldn't.

SSRI Citalopram may work by reducing inflammation and dampen down overreactive immune responses and may even reduce viral load in some studies (kinda inconclusive, its only suggestive)

In the effort to help other members find relief in this hell of a disease that almost caused me to try and unalive myself because i could not tolerate the amount of physical pain my body was going through I thought i would write this answer, to make sure my experience with Citalopram is added on this list and maybe help prevent a DEATH of a person.

1. Pubmed: Citalopram reduces endotoxin-induced fatigue
2. Citalopram suppresses thymocyte cytokine production

I thank you for your work. Really doing gods work out here man not joking.

Is this your first time taking an SSRI or SNRI? I got a similar but temporary improvement with sertraline, it was short-lived only lasted a few weeks. I think it would’ve happened with any SSRI it was only the first one that did this, I wasn’t ever able to reproduce it again with any other SSRI or SNRI I tried. Hope it works better for you.

 

[Blazer95]

It is my second antidepressant but my First SSRI. I took a tricyclic AD Prior to this one.

Man you Guys really frighten me haha. I Hope so badly this stays. I can finally do my own laundry again. It so great atm being "Just housebound". May Sound weird to anyone Not having this disease haha

 

[Hip]

Man you Guys really frighten me haha. I Hope so badly this stays. I can finally do my own laundry again. It so great atm being "Just housebound". May Sound weird to anyone Not having this disease haha

Let's keep our fingers crossed that it does hold.

 

[Hip]

after taking my new medication for 3 weeks and really feeling the difference I can say that the SSRI Citalopram moved me up from moderate-severe to moderate. I am still mostly housebound but i would say it's 0.5-step improvement as I experience much less pain and can do minor household chores again wich I couldn't.

Are your ½-level gains from citalopram still holding up, @Blazer95? If so, I will add your story to the list in the first post.

 

[Blazer95]

Yep still Holding. Haven't gone any further and i am stuck on a Plateau, but still 1/2 better.

 

[Dude]

have a new improvement story. Some of you might remember user martin aka pausedME. He was very active on the forum before his condition became very severe, and he even had to be tube-fed. He is now very active on Twitter under the username: @pausedME. He meets up with friends, makes music, and even works a little. He also shares what has helped him. It seems like it was pregabalin, taken every other day. I'm not sure about the dosage, but I think I read somewhere that it was 300mg.

 

[Hip]

He meets up with friends, makes music, and even works a little. He also shares what has helped him. It seems like it was pregabalin, taken every other day. I'm not sure about the dosage, but I think I read somewhere that it was 300mg.

Thanks for posting that. He does not seem to have posted the improvement story neither on PR or on the ME/CFS discord server.

 

[Judee]

Some of you might remember user martin aka pausedME. He was very active on the forum before his condition became very severe, and he even had to be tube-fed. He is now very active on Twitter under the username: @pausedME. He meets up with friends, makes music, and even works a little. He also shares what has helped him.

Hurray!!! It's so good to have an update on him. Thank you!!!

 

[Florida Guy]

Yep still Holding. Haven't gone any further and i am stuck on a Plateau, but still 1/2 better.

Thats great! I'm hoping along with everyone else that it keeps working and that it works for others. Even if only 1 chance out of 10, it would be worth taking. I'm assuming you are wise enough and experienced enough to keep on pacing and not really doing much more than before. I really hate those stories where they had a remission and went right to working full time plus school and then... it came back.

A 1/2 level up for me would put me at about mild/moderate and I'm sure I would do some socializing but I would pace rigorously as though life depended on it. It does really. But working to make money, nope. If I got worse I would know I traded dollars for health and thats a bad bargain. Deal with the devil kind of bargain but some people feel they have no other choice. They get forced into a bad bargain.

Please check in from time to time even if you do get worse and if its the same or better, then great

 

[Blazer95]

Thanks for posting that. He does not seem to have posted the improvement story neither on PR or on the ME/CFS discord server.

he is very active in germany advocating for ME/CFS connecting with some politicans and meeting up in clinics with doctors so he is doing a lot of work in our favour. maybe he is too buisy posting.

@Florida Guy: I am no where near remission and being moderate i am still 90% housebound and only work 1 hour a day from at home for a small design company and use a walking cane when outside. soooo... pacing is essential. no ME person can ever ever get arround pacing. so yeah thats burned into my brain pretty badly.

also i am a big believer in ME being mainly not a neurological but an immune disorder. i believe that being able to lift the immune dysruption - somehow - can or will cure this disease in the future, so i keep digging. mainly in the peptide area. testing around with thymosin alpha, bpc157, kpv. I had a short lasting near-remission experience with thymosin alpha so this is the most promising. i will keep everyone posted what i am doing. currently i cant post much because i have a bad gastritis and have paused all treatment (excluding citalopram i take that always now)

this disease is a volatile hell, you never know what your body throws at you next. cheers.

 

[Wishful]

no ME person can ever ever get arround pacing

Wrong. Some of us do not need to practice pacing. Some of us don't get physically-induced PEM, and some don't get cognitively or emotionally induced PEM, so we don't have to pace those activities. I think it's important to point that out, because theories based on wrong beliefs, such as "Every PWME gets physically-induced PEM." will lead to wasted resources.

also i am a big believer in ME being mainly not a neurological but an immune disorder.

What if it's a neurological disorder in which there's an abnormal response to immune activation? That will match your observations about immune modulating drugs affecting symptoms, but it would be a neurological disorder rather than an immunological one.

My observations better match the neurological disorder responding to immune activation. I think the brain has more immune cells (glia) than neurons, and those glia respond strongly to immune signals from elsewhere in the body.

Enteric glial cells might also be involved.

"A particularly crucial property of EGCs is their ability to maintain the integrity of the intestinal epithelial barrier, a role that may have important clinical implications not only for digestive diseases, such as postoperative ileus and inflammatory bowel diseases, but also for extradigestive diseases, such as Parkinson disease or obesity. EGCs could also contribute directly to disease processes (eg, inflammation) by their ability to secrete chemokines/cytokines in response to bacterial or inflammatory challenges."


Hmmm, if the root cause is glial dysfunction, does that make it neurological or immunological?

 

[Blazer95]

Wrong. Some of us do not need to practice pacing. Some of us don't get physically-induced PEM, and some don't get cognitively or emotionally induced PEM, so we don't have to pace those activities. I think it's important to point that out, because theories based on wrong beliefs, such as "Every PWME gets physically-induced PEM." will lead to wasted resources.

if you dont have PEM its not ME by criteria. sorry to be the party pooper

 

[Wishful]

if you dont have PEM its not ME by criteria. sorry to be the party pooper

No, the criteria do allow for exceptions. Also, I had physically-induced PEM for years, but don't have it now, and still have cognitively-induced PEM.

 

[Florida Guy]

have a new improvement story. Some of you might remember user martin aka pausedME. He was very active on the forum before his condition became very severe, and he even had to be tube-fed. He is now very active on Twitter under the username: @pausedME. He meets up with friends, makes music, and even works a little. He also shares what has helped him. It seems like it was pregabalin, taken every other day. I'm not sure about the dosage, but I think I read somewhere that it was 300mg.

I have heard that from more than one source. I happen to have some pregabalin left over from when I tried using it to combat insomnia. It proved less than ideal but does have some sleepy effects. I will start taking some in the evening and see how it affects my energy levels, brain fog and pem. I had given up my occasional walks since even a short walk might give pem in the legs a day or two later. If I'm able to go back to that without pem and if other things seem to improve then we shall see. Even if I do see noticeable improvement, I will still take it easy and not try to go over my limits even if they have improved.

So, moving forward trying new things but not expecting a miracle. If the preg works and keeps working we will have another improvement story. But, not a word until at least a few weeks or more to make sure its not placebo or quits working. Or a few weeks to find nothing happens. Then, on to the next thing

 

[Florida Guy]

I took 200mg gabapentin last night along with my usual sleep meds. I woke up this morning feeling great! I haven't slept like that in years. I of course had to push back on the thought that I was cured but if it will help my sleep like that consistently, that would be a MAJOR improvement. I feel like I have more energy this morning and my mood is better

Will it quit after a few days or weeks or will it last? That is the big question. Also, will I be able to do more without pem while it lasts? Ideally it lifts me up a full level or more and lasts like that martin fellow and some others. I say if you have access to gabapentin, give it a shot.

 

[julienl42]

I've seen improvement with a combination of Itraconozole via Nasoneb, Pepcid Zantac, Kratom the wakeup kind, alka seltzer, alvesco, albuterol and pym please see https://forums.phoenixrising.me/threads/pepcid-and-1-month-without-an-episode.92436

 

[dankeen]

I posted a story of a friend who improved from moderate to very mild ME from cyclophosphamide.
https://forums.phoenixrising.me/threads/i-cyclophosphamide.91208/page-2#post-2465367