Is ME a more curable illness than other serious conditions?

[alex3619]

Ahhh but wait! What of the well defined Dubbo studies in the great land of Australia that show all but 2% recover in the first 4 years?

You mean the post viral fatigue study? (Edit - actually post pathogen fatigue.) Nobody doubts that most with post viral fatigue will recover. Its not clear how many had ME. Some percentage of them had severe problems that persisted. I think that varied from eight to twelve percent, but its been a long time since I read this research.

In any case, the highest recovery rate seems to be in the first year. I have read the quote that 90% of recoveries are in the first year. I have yet to see the evidence, and I do suspect that mostly this is because they were misdiagnosed but I have no way to be sure. I would also like to see a long term follow up, to find out how many are still without an ME or CFS diagnosis.

Yet against that we have the small David Bell study in which he showed that 10/10 patients deemed recovered were still sick. They were mostly symptom free but I think many had restricted their lifestyle to cope.

If I recall correctly, the Dubbo study was funded by the CDC.

It is still the case that we have no large scale longtitudinal epidemiological study in ME and CFS. Its been needed for decades. Its also a risk that the diagnostic process is too poor for such a study to be reliable until we have diagnostic biomarkers.

An early consensus on recovery was that after five years almost nobody recovered. Again, I am unaware that there is any formal study showing this.

Yet I am also aware the recovery rate might be higher than we discuss, largely because it can take years to be diagnosed, but those who recovered along the way were never diagnosed. I also suspect that the biochemical changes at three years might decrease recovery, and that some subgroups with documented persistent infection, EDS, or are encephalitis survivors, might be less likely to recover.

Only biomarkers, longtitudinal epidemiology and published findings will really resolve these issues.

 

[heapsreal]

Ahhh but wait! What of the well defined Dubbo studies in the great land of Australia that show all but 2% recover in the first 4 years?

It was more a Post viral fatigue study than a defined cfs/me study.

What might interest you is to google Dr Bells 25 year follow up study. Very interesting. Basically most said they had improved but in reality it was more that they had adapted and paced better but were sort of desensitized to their condition. As DrBell interviewed and examined these patients he found many were still very symptomatic. Example i recall of someone saying they have improved but on questioning, do you get headache? Oh yes daily but i have learn to live with them. Do you sleep well? Oh no but thats normal for me. Things like activity level he found many were still resting several times a day and had aches and pains but shrugged them off as normal. Dizzy spells, yes but i just sit back down and wait abit longer before getting up.

I think over time many dont really know what its like to be normal and they eventually have a new normal which is a lot lesser functioning then someone else without cfsme. I still question myself when i say im an 8 or a 9 out of 10, am i really that close to normal?? My work colleague is 15yrs older then me and honestly runs rings around me when he tells me what he does after work and on his weekends etc. Things are very hard to measure not just amongst different cfsers who one says is a 6 but thats anothers 3 out of 10. Individually about the best is to say i feel better or worse.

Not only is it extremely hard to diagnose one with ME, its extremely hard to really measure ones level as theres too many variables.

 

[Jonathan Edwards]

@Woolie @alex3619 @Hip @halcyon @Jonathan Edwards

is what @Research 1st saying true about CFS patients not really knowing the truth?

I am afraid I find Research1st's posts too long to read most of the time.
I think you need to be aware that anyone can give whatever opinion they like here and many are off the wall.
Much the same applies within science - anyone can put up a theory and many are off the wall - even the ones that get put in the textbooks.

 

[Alvin2]

Much the same applies within science - anyone can put up a theory and many are off the wall - even the ones that get put in the textbooks.

This is the quote of the day

 

[notmyself]

Ahhh but waitl defined Dubbo studies in the great land of Australia that show all but 2% recover in the first 4 years?

i think recovery is more common than most people on this forum think,Is obvious that people who recover would not be on this page to start with and also many people who share our symptoms for long periods return to health without ever being diagnosticated with ME so they will not be part on any studies.NHS,Mayo clinic and other sites say that some people fully recover within 2 years,and around half improve ,and unfortunatelly around 30% remain very sick or continuing worsening.Everyone is diferrent,and in my opinion everyone have a chance of permanent recovering as long there is no clear evidence of permanent damage like is the cause in the disease you post...

 

[Kati]

Hi @silky you ask

Is ME a more curable illness than other serious conditions?

I would simply say, we don't know yet, we need to find cause and clinical trials to figure it out.

 

[Wonko]

Judging by the number of people cured (of M.E.) in the last 40 years I'd say, probably not

 

[Marky90]

i think recovery is more common than most people on this forum think,Is obvious that people who recover would not be on this page to start with.

I don`t see how thats obvious at all..From my standpoint at least. The first thing I would do is tell the community how and when it happened

 

[Orla]

i think recovery is more common than most people on this forum think,Is obvious that people who recover would not be on this page to start with and also many people who share our symptoms for long periods return to health without ever being diagnosticated with ME so they will not be part on any studies.NHS,Mayo clinic and other sites say that some people fully recover within 2 years,and around half improve ,and unfortunatelly around 30% remain very sick or continuing worsening.Everyone is diferrent,and in my opinion everyone have a chance of permanent recovering as long there is no clear evidence of permanent damage like is the cause in the disease you post...

I agree with you to an extent but I wouldn't consider the NHS or the Mayo clinic to be reliable sources of information on ME/CFS. I would say a lot more than 30% remain sick to some extent, at least amongst those diagnosed.

I think it is possible ME/CFS is more "curable" or at least, might be more amenable to treatment to get a patient a lot better, if they figure out the cause and find treatments, which we could be years away from. This illness only has a fraction spent on it that other major conditions have so the search for a cause and cure will be a lot slower.

 

[Orla]

Just to add, when I was younger AIDS was a death sentence, and a pretty hideous death at that. Now most people with it in the developed world have a good quality of life, and I think a lot live for a long-time (it might be a bit early to tell if they have a normal life-span by comparison to controls).

Compare this with the lack of progress in ME/CFS, primarily due to lack of research funding. We are still a joke to a lot in the medical profession. So even if in theory ME/CFS is more treatable than a lot of other conditions, it will remain only a theoretical possibility without the research funding to look into it.

 

[notmyself]

I don`t see how thats obvious at all..From my standpoint at least. The first thing I would do is tell the community how and when it happened

Yes ,this is what i exactly did just minute ago.but trust me most people would not do that,thay just want to leave the illness behind!

 

[ljimbo423]

Yes ,this is what i exactly did just minute ago.but trust me most people would not do that,thay just want to leave the illness behind!

I agree that most people that do recover, leave this forum and rarely come back if at all. That is very understandable, given the pain and suffering that cfs/me brings. I'm glad you are an exception to the rule!

I have a friend from another cfs forum that got well and is now enjoying her life and only goes back to the forum once every few weeks or so and makes one post, to stay in touch with me, but doesn't make any other posts. So very few people have learned of her recovery!

Jim

 

[Mij]

Gosh, if I recovered I would shout from the rooftop and share all the details on this forum

 

[JES]

There are recovery stories on this forum, for example one from helminthic therapy here, another one from EBV targeted protocol here. Here a forum member temporarily recovered for eight years after taking a single dosage of Isosorbide Dinitrate. There are also patients from various doctors who have recovered, most notably perhaps Dr. Chia's son. Both Chia and de Meirleir at least claim they have quite good recovery rates in patients. Of course, we should ask how many of these recovered had CFS/ME to begin with, but then again, I think not that many on this forum necessarily have ME if we define it as chronic encephalitis. It all depends how narrowly you define the illness.

 

[Gingergrrl]

Of course, we should ask how many of these recovered had CFS/ME to begin with

I'm quoting you @JES but this is an open question and is not aimed at you! I feel like any time there is a recovery story, regardless of the person's age, country, treatment protocol, etc, it will always be questioned whether that person had "true ME" vs. another illness. I deeply question if ME/CFS is my own diagnosis (and I am not a recovery story yet) so am not actually talking about myself.

But I am wondering in general, what would constitute a situation in which the person wrote about their recovery and then was not questioned if they had "true ME"? Maybe no one knows the answer and it is a rhetorical question b/c "ME/CFS" is actually many different diseases that overlap so no two people will have the exact symptoms or respond to the exact treatment? Am just curious!

 

[heapsreal]

I'm quoting you @JES but this is an open question and is not aimed at you! I feel like any time there is a recovery story, regardless of the person's age, country, treatment protocol, etc, it will always be questioned whether that person had "true ME" vs. another illness. I deeply question if ME/CFS is my own diagnosis (and I am not a recovery story yet) so am not actually talking about myself.

But I am wondering in general, what would constitute a situation in which the person wrote about their recovery and then was not questioned if they had "true ME"? Maybe no one knows the answer and it is a rhetorical question b/c "ME/CFS" is actually many different diseases that overlap so no two people will have the exact symptoms or respond to the exact treatment? Am just curious!

Agree.
I think if a cause of ME is found, say its entero virus X and theres a drug treatment for this. The condition ME will no longer exist and people will be diagnosed with EV X infection.

Its very possible that cfs will continue for those conditions that are negative to EV X even though they may have similar symptoms.

 

[Snow Leopard]

Just to add, when I was younger AIDS was a death sentence, and a pretty hideous death at that. Now most people with it in the developed world have a good quality of life, and I think a lot live for a long-time (it might be a bit early to tell if they have a normal life-span by comparison to controls).

This is the miracle of $100 billion dollars in research...

 

[Sushi]

But I am wondering in general, what would constitute a situation in which the person wrote about their recovery and then was not questioned if they had "true ME"? Maybe no one knows the answer and it is a rhetorical question b/c "ME/CFS" is actually many different diseases that overlap so no two people will have the exact symptoms or respond to the exact treatment? Am just curious!

Which reminds me that Ron Davis has been working on a diagnostic test that, in the small numbers tested, has been accurate--in that there was something testable that was consistent in all the ME/CFS patients tested and "not there" in the controls.

 

[alex3619]

Its very possible that cfs will continue for those conditions that are negative to EV X even though they may have similar symptoms.

This is I think a highly likely scenario. Subgroups might be split off as tests, treatments and cures are developed, until only those with very rare diseases remain. Each subgroup will no longer have a CFS diagnosis. Even ME diagnoses might be subject to this and ME might not be a clinical entity in its own right. I doubt its more than a handful of subgroups though, unlike CFS, and it might still be one group with some variations.

I first considered the possibility that even ME is different diseases when I looked at reports from different outbreaks. The symptoms differ. Then I looked at study after study over years in which about two thirds had one result, and about one third another. This made me wonder if we were really looking at two different groups. Now I have to consider EDS, ongoing infection for a minority, and encephalitis survivors. Are these all the same disease with different starting points? Or different diseases with a similar end point? The science will tell us eventually.

Without the science we will not know for a long time. That science requires funding. That funding will only happen if there is political will to do so, and I mean political in the broadest sense, which includes bureaucracy. Fortunately a few in the NIH are now willing to say that we are massively underfunded.

 

[alex3619]

I have a concern on splitting off subgroups. I do think this is great for those who get treatment, but there is a real danger that everyone still with untreated generic CFS or even generic ME who are left behind might be subject to even worse stigma. This is because the "real" ME patients are treated and move on, so the others "must not" be "real" patients. This is typical human thinking, and bogus, but its far too common, especially with politicians who are looking for quick fixes.