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[Forummember9922]

I think you folks may want to have a designated forum category for improvement / self reported remissions etc

thank you

 

[YippeeKi YOW !!]

I think you folks may want to have a designated forum category for improvement / self reported remissions etc

thank you

We do. Several I think, but I can't remember their titles. I'm tagging in a couple of people who I'm pretty sure will know ....

@Hip, @Rebeccare, @Shanti1, @Mary, @andyguitar

 

[Hip]

I think you folks may want to have a designated forum category for improvement / self reported remissions etc

thank you

There is a thread here with most of the major improvement / remission stories listed:

List of ME/CFS Recovery and Improvement Stories

As you can see, in a forum that has been around since 2009, and with over 31,000 people joining, there are very few major improvements or remissions that are reported.

 

[linusbert]

As you can see, in a forum that has been around since 2009, and with over 31,000 people joining, there are very few major improvements or remissions that are reported.

(you actually did not say this, but i reply anyways because i believe some people might interpret it that way - like i did at first)
i dont think we can use self reported remissions in comparisson to all time registered user as a metric for general improvements.
i feel only a handfull of people, maybe 1% of that, like 100-300 are actively writing in the forum.

usually people write when they have problems, and rarely write when they are fine or even got better.

one could even turn it around and argue that a lot of those 31000 actually got better, otherwise they would write more in the forums. but i also believe this as well isnt a correct way to approach this.

we may never know until we asked all 31000 folks and they gave explicit answers.

 

[Hip]

i dont think we can use self reported remissions in comparisson to all time registered user as a metric for general improvements.
i feel only a handfull of people, maybe 1% of that, like 100-300 are actively writing in the forum.

Yes that's right, most of the 31,000+ people who joined the forum are not active members. They may have been active members for a while, but then lost interest. At any one time, there is only a relatively small amount of active members on PR.

It may be true that some patients of this forum have improved and have not reported it, because they lost interest in the forum. But it's difficult to know.



There are a few studies that have looked at the long term outcome of ME/CFS:

This study found that of 33 adults with Fukuda ME/CFS, only 3% reported recovery after 5 years, and only 6% reported substantial improvement.

This systematic review of 14 studies on recovery found recovery was rare, occurring in just 5% of patients.

This paper on adolescents is more encouraging though, indicating that 80% of adolescents are recovered at the 25 year point.

 

[Wishful]

I'm not sure that it needs a separate forum, since that thread seems to be handling the task. Maybe some sort of easily-visible pointer to it so that people know that it's there. Then again, maybe a separate forum is the easiest way to make it visible.

I expect there's a lot of invalid reports: people who don't actually have ME, had a placebo effect from something they heard would help, or their improvement just incidentally coincided with taking a new treatment. However, somewhere in there are actual improvements which might point a researcher along a path to figuring out ME. Having the reports in a convenient place and form might make more ME researchers look at them. I'm not sure what form the researchers would like that information to be in. Any researchers reading this who want to respond? Maybe a list, with Treatment, Effect, Time frame (how long it took to start), when/if it stopped working?

 

[linusbert]

This study found that of 33 adults with Fukuda ME/CFS, only 3% reported recovery after 5 years, and only 6% reported substantial improvement.

This systematic review of 14 studies on recovery found recovery was rare, occurring in just 5% of patients.

This paper on adolescents is more encouraging though, indicating that 80% of adolescents are recovered at the 25 year point.

a chance of 9.. 10% isnt actually bad. that would mean of 31000 , 3100 are healed or substantially better.

and a chance of 80% by 25 years... well... i dont know if this is encouraging or depressing.

 

[lenora]

I'm a long term sufferer now aged almost 76, and have found that the symptoms move from one thing to another. Whereas I once had very swollen glands (like rocks), they simply disappeared and pain moved in elsewhere.

I fall a lot was found to suffer from two types of epilepsy and I'm now being treated for that. Interesting, as it had to happen in the ER with two doctors watching before anyone caught it. It's possible to lose consciousness and awaken in no time, with a broken limb or so. I don't think a change of symptoms is all that unusual, especially if surgery is involved.

I used to have what I would describe as "exquisite" pain (from FM). It is now toned down to bearable unless I overdo anything. The point is that I'm living without the horrid pain. Is that improvement....or just moving on to something else? It's complicated and I'm very happy for anyone, but especially for young people who manage to have a life again. Yours, Lenora

 

[Wishful]

I don't think a change of symptoms is all that unusual,

I agree. My ME symptoms have had some major changes over my 20+ years. New symptoms or responses pop up, others fade away or even vanish all of a sudden. Some symptoms remain unchanged. That's just how ME is.

A good time to remind people: ME does change over time, so it's helpful to retest your treatments occasionally. A treatment that has been working well to reduce a symptom may no longer be necessary, because the symptom is gone. That's happened to me several times, and I've only noticed it by skipping a dose, intentionally or accidentally. If you bought some drug/supplement that didn't work, but it's still hanging around in your cupboards, one of them might work now.

 

[Jo86]

Yes that's right, most of the 31,000+ people who joined the forum are not active members. They may have been active members for a while, but then lost interest. At any one time, there is only a relatively small amount of active members on PR.

It may be true that some patients of this forum have improved and have not reported it, because they lost interest in the forum. But it's difficult to know.

Right. People who get better just move onto the major challenges in their lives. Like for eg I'm a tad surprised to see you here after reading your threads on the B12 oils or high dose selenium making you feel a lot better. I know other symptoms remain, but clearing your brain fog is a MAJOR improvement in my estimation. There are few complete remission stories, but there are definitely many improvement stories.

 

[Wishful]

People who get better just move onto the major challenges in their lives.

Do they? I at least think that if I cured my ME, I'd stay active in this forum, to see whether anyone else benefited from my treatment, or if anyone figured out what ME is (and whether it might strike a cured person again).

 

[Jo86]

Do they? I at least think that if I cured my ME, I'd stay active in this forum, to see whether anyone else benefited from my treatment, or if anyone figured out what ME is (and whether it might strike a cured person again).

What you or I or anyone else would do... that's its own thing. But on avg, I'd imagine individuals struggle so much with this condition that as soon as they get significantly better, the last thing they want is to dwell in more of it simply by the goodness of their heart. They've got a life to attend to, finally, and would very much wish to move on and would forget about this forum in the process.

 

[Hip]

I'm a tad surprised to see you here after reading your threads on the B12 oils or high dose selenium making you feel a lot better.

I found high dose selenium helped, but it did not provide a major improvement (which I define below). The B12 oils improved my brain fog to some extent, but did not help any other ME/CFS symptom. So even with these two treatments, I still have moderate-level ME/CFS.

There are few complete remission stories, but there are definitely many improvement stories.

I've been reading the PR forum for many hours daily since it first started in 2009. I am particularly interested in recovery and improvement stories, so tend to be aware of any posted.

There are lots of ME/CFS patients on PR who report minor improvements in certain symptoms from supplements or drugs that they take.

But in terms of major improvements (by which I mean a treatment which moves the patient up one or more levels on the 5-level ME/CFS scale of: very severe, severe, moderate, mild, remission), then these are very few and far between.

In my thread which lists all the major improvement stories I remember reading over the last say 15 years, there's less than 100 of these stories.



In the case of improvements but not cures, the argument that people who get better just get on with their lives, and forget about ME/CFS forums, does not apply so much.

If you found a treatment that moved you from say moderate to mild, you still have ME/CFS, and so are probably going to still be interested in reading and posting on ME/CFS forums.

So if major improvements were common, we should be seeing a lot more of these posted on Phoenix Rising. The fact that we do not see many of these major improvement stories on PR thus suggests they are rare.

 

[Jo86]

I found high dose selenium helped, but it did not provide a major improvement (which I define below). The B12 oils improved my brain fog to some extent, but did not help any other ME/CFS symptom. So even with these two treatments, I still have moderate-level ME/CFS.

But isn't brain fog like half the battle in your opinion ? I know that if the B12 oils (I'm at Week 3 with iodide+selenium atm) can just give me a bit of my brain back, and therefor a bit of me back, and I can actually not be super awkward socially aaaall the time and can retrieve a bit of my natural rhythm and sense of humor and stuff, I wouldn't care about the other symptoms that much. I can live with a hypersensitive digestive tract, not being as strong physically as I'd like or having very slow starts to the day.

 

[Hip]

But isn't brain fog like half the battle in your opinion ?

Yes, for me personally, brain fog mars my life more than the physical fatigue.

Though other mental symptoms that come with my ME/CFS are also debilitating: these include: blunted emotions, stress and emotional sensitivity, anhedonia, anxiety, depression, irritability, sound sensitivity, some social withdrawal, and the PEM I get from socialising.


I found that the increased mental clarity from the B12 oils gave me the ability to write relatively simple software on a computer (computer programming used to be my profession), which I was unable to do before. So that was good. Piracetam also helps my brain fog (though worsens the blunted emotions, so I don't take it that often).

However, my brain fog is still there even with B12, and because of this fog, I am not really able to read the popular science / popular mathematics / philosophy books I once really enjoyed reading. I don't have enough mental clarity to get into these books.


But any small improvements in any ME/CFS symptoms are always welcome. So I am pleased with the B12 oils.

Another treatment that has helped me is very low-dose amisulpride, which is a dopamine system stabiliser drug. This I found improved my social withdrawal symptoms, irritability, sound sensitivity and other symptoms.

 

[Forummember9922]

Thank you for responses. It was just sort of depressing to join and initially see a category about deaths but not improvement reports.

The fact that we do not see many of these major improvement stories on PR thus suggests they are rare.

I know reddit is kind of silly and a mess in general which is why I appreciate your community a lot more, but just FWIW https://www.reddit.com/r/cfs/search?q=flair_name:"Remission/Improvement/Recovery"&restrict_sr=1

 

[linusbert]

So if major improvements were common, we should be seeing a lot more of these posted on Phoenix Rising. The fact that we do not see many of these major improvement stories on PR thus suggests they are rare.

those are very reasonable thoughts.
but there is still the 1-5% rule. it applies for conversion of people, like interacting and viewing content. its like for 1-5% of views on youtube are actually commenting. or on twitter, 1-5% are interacting with a tweet.

therefore i would believe your 100 might be 1-5% , therefore 10.000 people got better and left.

the % varies. could be different in specialized communities.

but even 100s is still giving me some hope, because the chances for recovery with HIV or other bad diseases seam to be much worse. so there is at least a chance.

 

[Hip]

but even 100s is still giving me some hope, because the chances for recovery with HIV or other bad diseases seam to be much worse. so there is at least a chance.

In terms of maintaining hope: one thing to consider is that when a treatment has shown efficacy for ME/CFS, it tends to only work for a small percentage of patients. For example, Dr Chia has said LDN helps only about 10% to 20% of ME/CFS patients (but for those it helps, he says it does so very significantly).

And anecdotally, on this forum, oxymatrine for enterovirus ME/CFS only provides major benefits for a similarly small percentage (Dr Chia reckons oxymatrine makes major improvements for 30%, but experience on these forums suggests around 10% is more accurate figure).

So across the board of the many ME/CFS treatments available, they all tend to only work for a small subset of patients.



What this mean? It means that in order to have a reasonable chance of finding a treatment which works for them, patients would need to try lots of different treatments, until they hit the jackpot.

Thus you could argue that the reason we do not see more major improvement stories posted on PR is because many ME/CFS patients do not have the energy, motivation, clarity of mind or the finances to try out the dozens and dozens of the various treatments that other patients have benefitted from, or which ME/CFS doctors often prescribe.

Also, some patients can be very ill and/or very sensitive to meds, and thus may experience intolerable side effects from treatments, so they may not be able to try the treatments they would like to test (this is my case).

But if more patients were to try out some of the more promising treatments available, then perhaps we would see more success stories posted.

In order for ME/CFS patients to maintain hope, it is reasonable to assume that there may be a treatment out there which will work really well for them. It's just a case of trying to discover which treatment that is.

 

[Hip]

I know reddit is kind of silly and a mess in general which is why I appreciate your community a lot more, but just FWIW https://www.reddit.com/r/cfs/search?q=flair_name:"Remission/Improvement/Recovery"&restrict_sr=1

That's an interesting link, I did not know that you could select all the Reddit posts with that Remission/Improvement flair.

I will see if there are any good quality recovery or improvements stories that can be added to the PR improvement thread.

Though often in these stories, the degree of improvement is not quantified, so then the story does not carry much weight. Patients might say for example "treatment X significantly improved me", but that is a vague statement, unless they quantify their improvement on an ME/CFS scale.

Also, in these stories, you have to be careful that the patient did not just have post-viral fatigue. This is a condition which spontaneously resolves itself, but it can take up to two years or so. Thus if you see a patient get better within 2 years of being hit with ME/CFS symptoms, this can just be the natural recovery of post-viral fatigue.


Having just had a quick look of some of these Reddit stories tagged with the Remission/Improvement flair, some I was already aware of (like this fascinating story of a woman who used progesterone to mimic the conditions of pregnancy, and obtained remission). But I cannot see that many good quality stories in that list. But those I find I may add to the PR thread.

 

[Forummember9922]

Thanks Hip I am rooting for you and the gang in the Markov Theory threads, seems plausible imho