How Much Longer? ME Advances: Projected Timeline for Tx or Cure

[sparklehoof]

Hey Friends,
I’m not sure if I’m posting my question in the right forum.
I’ve been having more cognitive symptoms and have gotten way behind in ME news updates. I’m getting lost in the sea of acronyms for all the committees and subcommittees etc. and am looking for a very simple big picture overview, timeline, synopsis and map on the state of a treatment or cure for ME. Does this exist?

Here’s a ridiculous made up example:
1. This is what we know (GET isn’t the answer),
2. this is what we know we don’t know (where ME comes from)
3. and this is the plan:
With illnesses like ME, these are the steps we need to take to make a treatment or cure that is covered by insurance.
1st we need to raise $- we expect this phase will take 100 years
then these are the next steps with estimated time to complete,
if we learn x in 2050, than we can start y in 2060, if we don’t learn x than we need to go back to step 1, if y works, there could be a treatment ~the year 3000.

I don’t want to be an impatient patient, but I want to have a better understanding, as we all do, of where we are and where are the bottlenecks (ex. Are researchers disinterested or stumped or is more of a red tape, stigma, advocacy issue.

Thanks everyone

 

[maybe some day]

Well, in simple terms, we are now where AIDS was in the 80's
We see something wrong at the cellular level, but no smoking gun as to why.

 

[Belbyr]

There are several popular trains of thought and they might all be correct because there are subgroups in this illness.

1. Autoimmunity that hasn't been diagnosed
2. Autoimmunity possibly against different nerve receptors like Alpha, Beta, Musc, Serotonin, Dopamine, etc.
3. Sickness behavior (no chronic infection but body was knocked out of wack, in a 'trap', new homeostasis)
4. Unknown infection
5. Microbiome issues

I'm sure there is more hypothesis but those seem to cover about 95% of what is talked about over the last 2-3 years.

I honestly think we will have therapies for many of these subgroups within the next few years. The fact that inflammation is being found more and more tells me we have a target to treat.

 

[roller]

i think as long as the analysis situation is so dire, no solution can really be found.
every finding is based on some guessing only. never all or sufficient influential parameters are known.

e.g. FMTs. i understand, they dont even know what is in one.
some things, yes. but there are things in it they say, that they dont "see", know. this is scaring, that they cant even figure out a piece of feces. we have bacteria, but its impossible to see them - except you take litres of blood (trypanosoma.. e.g., or tuberculosis). ridiculous.

imo, back to square one.

1) any substance must be broken down by technology into its "molecules" or atoms, dnas or whatever to see what its made of. black box. sample in at the left, result out on the right.
quick, cheap, without any major fuss. this should be possible in the time we live.

2) body model of this

3) tech to look into each and every body thing and cavity, means going there with microcam on board. they cant. e.g. they can only figure out whats in the brain when they slice it in pieces. ridiculous.
microrobots all over the body.
anytime, easy, cheap.

4) update body model

 

[Wishful]

Too many variables for a simple prediction. The core cause of ME might take 50 years to identify, or it might already have been discovered in a lab this morning. If they come up with a new potential drug for it (according to a model), it could take 20+ years before it passes all the red tape. However, it could also have a simple herbal remedy or existing approved drug, and be available immediately. There's also the possibility of accidentally stumbling on an effective treatment before actually understanding the disease.

I'm expecting that the core cause will be found within years. Medical technology has increased significantly since the start of HIV/AIDS, so it's reasonable to expect faster results. I'm optimistic about the possibility of an existing approved drug (or combo) being an effective treatment. I'm also optimistic about there being a one-shot treatment that knocks our systems back into proper function (full remission), although we may need occasional repeats when we retrigger our ME, and may need some ongoing treatment to minimize the chance of retriggering.

 

[Belbyr]

Good point Wishful, technology is insane and growing ever faster to our benefit.

I think the community has made more progress from 2016-2019(3 years) than it did from 2006-2016(10 years).

 

[Wishful]

Yes, and research findings from the different groups feeds back to improve all research, and encourages new research projects and groups, so we should see ever faster progress. Furthermore, research in the past was hindered by the perception that it was a psychiatric disorder. Now it's becoming a fashionable research opportunity.

 

[nryanh94]

Well, in simple terms, we are now where AIDS was in the 80's
We see something wrong at the cellular level, but no smoking gun as to why.

So you’re saying that we’re looking at 15-20 years

 

[Navid]

So you’re saying that we’re looking at 15-20 years

arrrrrrrrrrrrrrgh!!!!!!!! god I hope not.

 

[Wishful]

Maybe I'm overly optimistic, but I expect a major breakthrough in understanding ME in the next year or two. With all the nifty new tools available, and all the good people working on it, someone should find something noticeably out of balance. Then some more focused work to figure out why it's in that state. Then theoretical treatments. A completely new drug would take 20+years for approval, though I think there's some options for allowing experimental drugs for life-threatening cases.

I'm still optimistic about an understanding in a few years and a treatment that doesn't need lengthy approval.

 

[Stretched]

Multiple Sclerosis is treatable to some comfort level, sic greater than MECFS which otherwise manifests some similar symptoms? Is it on the brink of being cured; if so, then perhaps CFS is right behind it, both having neurological etiologies? Whatever its state of dis/comfort from a patient’s perspective MS has had a longer time for research and treatment development (drugs). Maybe there’s some hope in looking down the MS rabbit hole=&

 

[Murph]

Summary: we don't understand anything and I don't expect a cure.

The onsets are too various and the symptoms too diverse to create useful groups to study. I expect in 80 years we will begin to understand all the subtle long-lasting effects a virus or trauma can have on gene expression and immune activity and metabolism and nerve function. But not soon. We don't have the tools.

But i'm not without hope.

If we zoom in on vascular and rheological issues we may be able improve symptoms related to blood flow, like POTS and maybe brain fog. This part of the body is relatively simple (compared to the brain or immune system at least!) and it has lots of interested and well-funded scientists looking for new puzzles to sink their teeth into.

I'm also hopeful that progress in understanding the microbiome could help reduce severity for some people. Expect major breakthroughs in FMT in the nest 15 years. There's a huge amount of study going on.

 

[Stretched]

My GP is new to CFS and most all of its dynamics. He’s a former academic with the NIH but is helping with some of my symptoms. I’m his only CFS patient. Strangely, in being friendly conversant today he told me of a really esoteric recent study in neurology which added to his credence of CFS being as serious as we PWCs know it is and possibly on the cusp of new discovery. I came home and looked up his referenced article. While it gets pretty technical scanning it does give some insights and optimism about CFS being looked at deeply in the brain. If interested here’s the source:
REVIEW ARTICLE
Front. Neurol., 10 January 2019 | https://doi.org/10.3389/fneur.2018.01033
Division of Neurotherapeutics, Massachusetts General Hospital, Harvard Medical School, Boston, MA, United States

 

[perrier]

Summary: we don't understand anything and I don't expect a cure.

The onsets are too various and the symptoms too diverse to create useful groups to study. I expect in 80 years we will begin to understand all the subtle long-lasting effects a virus or trauma can have on gene expression and immune activity and metabolism and nerve function. But not soon. We don't have the tools.

But i'm not without hope.

If we zoom in on vascular and rheological issues we may be able improve symptoms related to blood flow, like POTS and maybe brain fog. This part of the body is relatively simple (compared to the brain or immune system at least!) and it has lots of interested and well-funded scientists looking for new puzzles to sink their teeth into.

I'm also hopeful that progress in understanding the microbiome could help reduce severity for some people. Expect major breakthroughs in FMT in the nest 15 years. There's a huge amount of study going on.

Your response is interesting. But certainly the PEM is what unifies folks; the disease is essentially Exertion Intolerance. Is there any attention given to this?

 

[used_to_race]

So you’re saying that we’re looking at 15-20 years

I think this is a big overestimation. We can do things computationally now that were not possible even 10 years ago, let alone 35-40 years ago. Our capacity to measure what is going on inside the cell is immensely more powerful than it was 35-40 years ago. Fast internet allows for collaboration and communication on a level that was not possible in 1980. All of these factors will reduce the time taken to do the same research by a factor of at least 10, if not 100. However, this is not the same research. CFS is a more complex disorder than HIV, so it is impossible to compare. All we know is that we have extraordinarily better technology and existing scientific models to draw upon than we did then. The problem is trickier and the funding situation is dire (although finally improving). I hope we will see major strides within 5 years.

 

[joshualevy]

Well, in simple terms, we are now where AIDS was in the 80's
We see something wrong at the cellular level, but no smoking gun as to why.

I think it is a big mistake to equate ME/CFS now with AIDS in the 80s, for at least three reasons:
1. AIDS was not at just one place in the 80s! It started in one place, but ended in quite another.
2. None of the places that AIDS was at in the 80s correspond very well to were ME/CFS is now.
3. ME/CFS is in negative space, compared with AIDS back then.

Think about a quick timeline for AIDS in the 1980s:
1981 AIDS first described, as a syndrome, with no known cause, prevention, treatment or cure.
1983 New virus found in AIDS patients.
1985 New virus named HIV.
1986 (approximately) HIV widely understood to be the cause of AIDS. AIDS cause and prevention known.
1986 First clinical trial showing effectiveness of AZT as a treatment.

So in 1980-1, nothing was known about AIDS at all, which is not the case for ME/CFS now.
By 1986 a treatment had shown effectiveness, and (although I did not list it above), prevention was well understood.
The only time period that comes close to matching our knowledge now, was around 1981-1983. Around 1983 it became generally understood that AIDS was a sexually transmitted disease. Even today, there is no general consensus on how people get ME/CFS.

The biggest difference between AIDS in the 1980s and ME/CFS now (in my opinion) is the attitude towards researchers and the research done to date. AIDS activists were lobbying for more money and more research. AIDS activists strongly supported the existing researchers and the direction research was going. They protested very strongly against conservative politicians and social discrimination, but did not target researchers at all. Quite the opposite, they were allied with scientific researchers. On the other hand, the current ME/CFS activists are lobbying against previous research and previous researchers. They are trying to convince the scientific establishment that the last 15 years of research is wrong, and needs to be erased. That is a tough position, and AIDS activists were never in that position.

In a sense, current ME/CFS activists are the exact opposite of the AIDS activists because ME/CFS activists are trying to use social and political pressure to change the course of scientific research, while the AIDS activists were trying to use scientific research to change the course of social and political attitudes.

 

[percyval577]

But certainly the PEM is what unifies folks; the disease is essentially Exertion Intolerance. Is there any attention given to this?

This is key, I think, why does pem appear, i.e.:
why does it differ in different persons, and can be pretty specialized to one kind of action? E.g. pacing!
why can it appear delayed? E.g. one day afterwards!

There are approaches which are interesting, but I would think they are restricted:
- The microbiome is interesting and might be a therapeutic influence, but it will hardly be able to explain pem.
- Autoimmune issues are interesting and might lead to some insight of how a person could be affected by an immuneresponse, but as far as I have understood there is no strong correlation between ME and known AI.
- Metabolics are intersting and I would find it strange if they wouldn´t be involved, but can they on their own explain pem? I would think they are a technical aspect of something which has gone wrong. Interesting enough and hopefully a therapeutic target.

The immunesystem might be complex enough to explain pem, in fact it could easily turn out to be more complex than the nervous system. But the key for an understanding of the disease should well be the nervous system, because the responses to actions can be influenced by pacing. How should pacing, in a first place, reach other systems like the immunesystem or atp production in generel?
I am not sure if an known or unknown infection would be able to explain pem, including delayed or paced one. The question might rather be, what have the known infectious triggers in common that they can induce the disease?

A second key question might be:
Why can people recover (in fact to such a low percentage of 4% in endemic cases, but in outbreaks they have recovered to 50%)?
It might even indicate that a solution will be made of all days conditions.

 

[Wishful]

Your response is interesting. But certainly the PEM is what unifies folks; the disease is essentially Exertion Intolerance. Is there any attention given to this?

I have to disagree. I have my baseline symptoms even without exercise. Physical exertion of specific types can trigger my PEM, but other exertion, even six-hr bike rides, doesn't trigger PEM. I see PEM as a symptom in addition to the baseline ME symptoms, triggered by various factors. My physically-induced PEM is different in delay time and symptoms from my cerebrally-induced PEM. My guess is that the various factors, such as increased peripheral cytokines or depletion/accumulation of certain brain chemicals, disturbs the central dysfunction of ME, causing the extra symptoms.

While I think that studying PEM could lead to an understanding of the core dysfunction, I also think that the core dysfunction could be discovered without studying PEM.

 

[percyval577]

I have my baseline symptoms ... without exertion.

As the symptoms itself are considered to be unspecific they won´t give any clue. So, because you feel ill it could be an illness feeling or behaviour in response to an infection. Now, so far no infection has been found which hasn´t been found in healthy persons either.

There is no clue to get so far.

Physical exertion of specific types can trigger my PEM, but other exertion, even six-hr bike rides, doesn't trigger PEM.

I would say this is good luck for getting a clue. But I would say it like so: the possibility of specific types of exertion leading to a negative impact or not resp., of delayed impact, and of pacing should be outstanding enough.

Otherwise we could well say that the ability to perform gets more or less fast worse while performing, and that resting doesn´t lead to a normal relief/recovery from the exhaustion. But for a short time this should apply to many normal serious enough diseases as well. In mecfs though it can be a laughable exaggerated loss of ability, as we say (but mostly aren´t believed).

I see PEM as a symptom in addition to the baseline ME symptoms, triggered by various factors.

I too can tell quite some influences as well, but they cannot be generalized. Whereas the structures of PEM (delayed, pacing, specific types) stick out enough, and it´s typically related to exertion. I admitt that it may not occure clearly enough. For long time I myself would have reported a PEM-structure only after three or four (other) symptoms, "realitas-symptoms" or "what-symptoms". Whereas PEM looks more like a "how-symptom" (I think the best attempt so far is the definition which has been given the name PENE).

Furthermore, there now is hope to get more ideas on the cards, because we can try to relate a specific processing (<-specific types of exertion) to a sick feeling which stays (=the baseline).

 

[ljimbo423]

I think the leading research teams are researching the 4 cornerstones of ME/CFS. Both the OMF and the Solve ME/CFS initiative (SMCI) teams (I think there are about 10 research teams total) are focused on the gut, immune system, mitochondria and the brain.

I'm confident this is where they will find the root cause of ME/CFS and obviously they must think so too or they wouldn't be focused on these things.

As far as an actual timeline goes for them to find the root cause so they can better find treatments. I don't know and anything I say would just be a wild guess.