List of ME/CFS Recovery and Improvement Stories

[Hip]

Interesting, what about intra nasal or IFN gamma that they also sell? Have you ever tried that or know someone who has?

I have not tried. Generally, the rationale I propose for use of interferon suppositories is detailed in this post. I think that technique could keep ME/CFS patients in remission. Interferon therapy results in dramatic improvements in around half of all enterovirus ME/CFS patients who try it. But they relapse some months later. So my idea is after interferon therapy, you then take daily interferon suppositories as a maintenance dose, to prevent relapse.

 

[batty_ash03]

You can add my improvement story if you'd like.

I went from housebound and mostly bedbound to mild/only getting PEM from cardio exercise in 2 months using Mestinon. I take 45mg 3x/day and have been on it for 4-5 months with lasting improvements so far. I'm able to do some strength training in physical therapy now and work part time from home.

 

[leokitten]

Are there specific ME symptom clusters or ME subsets that are more predictive of a good Mestinon response? Or like with everything else we have to trial and error…

 

[Hip]

You can add my improvement story if you'd like.

I went from housebound and mostly bedbound to mild/only getting PEM from cardio exercise in 2 months using Mestinon. I take 45mg 3x/day and have been on it for 4-5 months with lasting improvements so far. I'm able to do some strength training in physical therapy now and work part time from home.

Very interesting, I've added your story. Can I ask, when you started Mestinon (pyridostigmine) how long did it take for the improvements in your ME/CFS to manifest? Was it within days, or are we talking weeks or months before the benefits appeared?

 

[fingers2022]

I've been on PrEP (Tenofovir + Emitricitabine) for 5 years. It is the only ARV(s) I can obtain without prescription and costs me about £1/day. Difficult to say if symptoms are less severe as that is very subjective and difficult to remember. What I will say is that my physical capacity has improved, including my recovery rates. I have quite a lot of objective quantitative data on this, much of which is online, e.g. UK parkruns, Strava.

On the 2 or 3 occasions I have stopped meds due to supply issues I have deteriorated. My VO2max has not deteriorated with age over the 5 years, and I believe I could make further improvements with access to other ARVs, e.g. Bictegravir (Biktarvy = Bictegravir + Tenofovir + Emitricitabine).

Please include in document if you see fit.

 

[Hip]

Difficult to say if symptoms are less severe as that is very subjective and difficult to remember.

Yes, it can be hard to remember what one was like in the past. But most ME/CFS patients can relate to the simple ME/CFS scale of: very severe, severe, moderate, mild, remission. Roughly speaking this scale is:

Mild — an approximate 50% reduction in pre-illness activity level
Moderate — mostly housebound
Severe — mostly bedridden
Very severe — totally bedridden and need help with basic functions

If you move up 1 level on this scale, you will notice, because your daily lifestyle changes quite dramatically (eg, if you are severe and in bed most of the day and night, and then as a result of treatment, you move up 1 level to moderate, so that you are now up and about during the day and can leave the house a few times a week, then you will notice that).

So on this thread, I've only tended to include patients who have made at least a 1 level improvement in their ME/CFS, which is a clearcut and noticeable change. There are many more minor improvement stories on this forum, but here I am just collecting the 1 level or more improvements.

 

[fingers2022]

Yes, it can be hard to remember what one was like in the past. But most ME/CFS patients can relate to the simple ME/CFS scale of: very severe, severe, moderate, mild, remission. Roughly speaking this scale is:

Mild — an approximate 50% reduction in pre-illness activity level
Moderate — mostly housebound
Severe — mostly bedridden
Very severe — totally bedridden and need help with basic functions

If you move up 1 level on this scale, you will notice, because your daily lifestyle changes quite dramatically (eg, if you are severe and in bed most of the day and night, and then as a result of treatment, you move up 1 level to moderate, so that you are now up and about during the day and can leave the house a few times a week, then you will notice that).

So on this thread, I've only tended to include patients who have made at least a 1 level improvement in their ME/CFS, which is a clearcut and noticeable change. There are many more minor improvement stories on this forum, but here I am just collecting the 1 level or more improvements.

Thanks, Hip.
Ok, I can get a very good handle on my activity levels pre and post ME as I have kept training logs since 1978.
At my peak pre-ME, my average weekly energy expenditure in training was 12000 kcals.
Before taking ART I was down to 1500 kcals...a reduction of 87.5%. This assumes my DLA's remained about the same, which is not too far off as I got back to work after initial 6 week illness. The average of 1500 only came about 2 years in as things improved and stabilised a bit after a long rest period. So this would clearly put me in the 'mild' category in spite of the 87.5% reduction, albeit with my pre-ME activity levels way higher than most ME sufferers, well most people really, as I was competing at elite level in triathlon and working full time in IT / software development.
On ART, I have increased my activity levels to 3000 per week...a 100% increase, but this is still 75% below my pre-ME levels. The rest of my life is equally active, so I think my 'training' levels are a good approximation as a measure. I am still squarely in the mild category as I am far from housebound.
My personal problems centre around how unwell I feel rather than what I am able to do, although I do have to take downtime days when in what I call a viral patch, which is about every other month for about a month.

For a scientific trial of ART, whilst activity levels measured as energy expenditure will be a good measure, we plan to do physiological and molecular measures such as RHR, VO2max, lactate threshhold, CD counts and other immune function measures. Qualitative data such as perceived wellness and symptom reporting will of course be important too. Without such trials, as you well know, all evidence is anecdotal, but I do appreciatre it's the best we've got.
Congratulations on your excellent piece of work here.
Best wishes
Steve

 

[Husband of]

You can add my improvement story if you'd like.

I went from housebound and mostly bedbound to mild/only getting PEM from cardio exercise in 2 months using Mestinon. I take 45mg 3x/day and have been on it for 4-5 months with lasting improvements so far. I'm able to do some strength training in physical therapy now and work part time from home.

Congrats on the improvements; Keen to hear if they have lasted

 

[godlovesatrier]

Funny that, ART made me super sick, whilst I wasn't on it long I had to stop because I couldn't think straight and my level of function had been impacted very badly. I became housebound while on it at any rate.

 

[nolongerdiseased]

I had post-viral ME/CFS for 7 years from age 12-19. Experienced post-exertional malaise + exercise intolerance, as well as a host of other ME symptoms so was definitely not misdiagnosed idiopathic chronic fatigue. I've been in full remission for over 6 months, and it took ~5 months to get there. Was at "mild" level, 50% normal function, 6 usable hours per day. Combination of abilify, an intense autoimmune protocol, and getting a cold for the first time in 7 years accumulated to total recovery for me.

-Goldner autoimmune protocol for 3 months. This was the first thing to ever work for my ME/CFS and raised my functionality by ~25% ( 1 level gain from mild to very mild?). Eliminated my PEM. Diet is supposed to be done short term, is extremely restrictive. Consists of 3L water, 1/2 cup chia/flax seed ground, 650g raw cruciferous veg/leafy greens daily with NO food other than raw fruit/veg allowed. Iodine and b-12 supplement needed. Certainly wouldn't recommend for those with functionality lower than moderate.

- Low dose abilify raised my funtionality by another ~15%. I was on 0.75mg for ~2 months. Improved my immune system response too, which enabled me to get sick for the first time since contracting ME/CFS.

-Catching a cold randomly put me into complete remission. Before the cold, I was around 90% function. 11 hour days doable. Day 1 of symptom onset, my immune system was "fixed" and ME/CFS symptoms vanished. Since had covid and no relapse.

 

[Wishful]

That's the kind of story that can give the rest of us hope. Your treatment is unlikely to work for anyone else, but the fact that you could switch your ME off--and keep it off--shows that it can be done.

It also strengthens the theories involving the immune system: that somehow at least the part of it that generates the symptoms gets switched on and stays on. Further immune activation (infections, allergies, muscle microtears) can worsen this process. For a few lucky individuals, an extra immune activation event might switch ME off, or something might change the threshold for ME's mechanism, allowing it to switch off.

Lucky you. Please let us know if your ME switches back on. Hopefully it won't, but it's important information if it does, and whether you can switch it off again.

I think if that happened to me, I'd be paranoid about anything that might switch it back on.

 

[godlovesatrier]

Wish a cold would do that for me. I'm sick all the time, guess that's good in one sense, but bad in another? Not sure. But I can see how hyper activated immune states would benefit from normalisation and a cold might do that. Good luck to your continued remission.

 

[Rufous McKinney]

I expereinced about one week of Good gut function after not being able to eat for many days from gastroperesis.

someting bad got starved out of there maybe, but returned after about a week.

 

[Hip]

-Goldner autoimmune protocol for 3 months. This was the first thing to ever work for my ME/CFS and raised my functionality by ~25% ( 1 level gain from mild to very mild?). Eliminated my PEM. Diet is supposed to be done short term, is extremely restrictive. Consists of 3L water, 1/2 cup chia/flax seed ground, 650g raw cruciferous veg/leafy greens daily with NO food other than raw fruit/veg allowed. Iodine and b-12 supplement needed. Certainly wouldn't recommend for those with functionality lower than moderate.

Thanks for posting your story. So would you say by following this Dr Brooke Goldner autoimmune diet for 3 months, you improved your ME/CFS by a ½-level on the ME/CFS scale, moving from mild to even more mild?

Usually I tend to only include treatments which have improved patients by at least 1 level on the ME/CFS scale, eg from moderate to mild, or mild to full remission. But I might add your story of this diet. Do you know the principle by which this diet works? Do you have any diagnosed autoimmune diseases, by the way?

 

[nolongerdiseased]

@Wishful, My ME always seemed extremely immune oriented to me, being post-viral with a then acquired inability to get colds/flus for years on end + relapses with vaccinations.

The worry around relapse has definitely been an issue to me. I managed to safely taper off abilify and get covid with no symptom reemergence. I do have to maintain a low inflammation diet, and in cases where I've eaten too much inflammatory food (eg, meal out + dessert) I find I have sore throat and nasal congestion the next day. If I do relapse, I at least have found something that works for me that I can hopefully replicate in future.

@Hip, I would say that description is accurate considering most ME scales start at mild. I have no other diagnosed autoimmune diseases, nor ever had symptoms of any autoimmune disease other than ME. The diet seems to work on a basis of taking away everything that could possibly cause inflammation to the body/immune system, and adding in foods which are anti-inflammatory and aid in immune function in mass quantities. This correlates with research available, especially the benefits of omega 3 acids in autoimmune disease. The only thing I have no idea on is the fact that having even cooked plant foods seems to halt symptom improvement. As far as I know Dr Brooke Goldner also does not know why this is the case, but from mass patient experience it's an apparent pattern.

I will say it seemed to be a slower process seeing symptom improvement for my ME compared to others with more "general" autoimmune diseases which the diet is catered to.

 

[Wishful]

The only thing I have no idea on is the fact that having even cooked plant foods seems to halt symptom improvement.

Did you notice any other counterevidence to the inflammatory vs not-inflammatory theory? Few foods have only one effect on the body. Vegetables worsen my symptoms due to their fibre content, not their inflammatory or not inflammatory properties. I had to avoid cruciform veggies due to their goitrogenic properties. Some foods probably have body-affecting properties that science isn't aware of yet.

 

[nolongerdiseased]

Did you notice any other counterevidence to the inflammatory vs not-inflammatory theory? Few foods have only one effect on the body. Vegetables worsen my symptoms due to their fibre content, not their inflammatory or not inflammatory properties. I had to avoid cruciform veggies due to their goitrogenic properties. Some foods probably have body-affecting properties that science isn't aware of yet.

Histamines would probably be another counterpoint to the anti-inflammatory theory, since they'd cause a lot of problems for those with intolerances. For the diet, AFAIK those with known food intolerances (fiber, histamines, etc) are recommended to avoid foods which give them issues and instead lean to options less likely to cause flares. Eg, those with fiber issues are recommended to take a very slow approach and relace flax/chia seeds with flax oil, those with histamine issues would likely avoid spinach and replace with broccoli, cauliflower, kale, etc. I assume vice versa for goitrogenic sensitivities. I'm not sure I would be that inclined to try a protocol like this with multiple food sensitivities for fear of causing a flare.

 

[godlovesatrier]

Was just thinking when you said about getting a cold for the first time. I've noticed that when I take an immune modulator I start sneezing often followed by cold like symptoms. I assumed I was just imagining this but it's been far too repeatable happening over and over again for most of the year.

I started imunovir today and am certainly feeling the effects of that. Alreasy feel quite sick and music is hurting my head a bit. Yet I also feel clearer at the same time mentally. Weird combination. Anyway I started sneezing when I took it and that has continued. Must be the bodies way of expelling things.

I've got high hopes for imunovir - Inosine was a bit of a dud for me tbh. Based on the (tolerable) herx so far this might be a winner. I'll report back if I manage to get any higher than 80%. Which I attained in 2021 on Josh's protocol but has since slipped due to vaccines and reactivations.
If anyone is in doubt about reactivations I urge you to read the new study which shows ME patients suffer seven viral reactivations when they get mild or even asymptomatic covid compared to controls. Hhv-6 and herv were found to be much more strongly activated in female patients.

Good luck all!

 

[Wishful]

I've noticed that when I take an immune modulator I start sneezing often followed by cold like symptoms. I assumed I was just imagining this but it's been far too repeatable happening over and over again for most of the year.

I had a similar experience. It took a long time, but I eventually realized that whenever I had oranges--which are supposed to boost the immune system--I would get very minor cold symptoms the next day: just a sneeze or two, and a hint of feeling unwell, which would pass by the next day. It was reliable enough that it got my attention, but I dismissed it as immune system weirdness.

Then in 2001, I had some oranges, and it felt more like serious flu symptoms. That marked the start of my type IV food sensitivity, and may have been the start of my ME. So be very careful, this might lead to developing ME! Oh, too late I guess.

Do watch out for developing type IV sensitivity though. Definitely not fun. That's yet another disease where all the experts will tell you: "Sorry, can't help you." Food poisoning from spoiled coconut milk is probably not a guaranteed cure.

 

[Judee]

I start sneezing often followed by cold like symptoms.

For me (and also my Mom when she was still here) this meant an allergic reaction. It could just be a coloring or filler ingredient (maybe more likely) or the medicine itself.

Like @Wishful said, please be careful.