Possible future of M.E research

[paul80]

What's the most optimistic scenario, which isn't total fantasy, that you can envisage happening with the future of M.E research?

Especially in terms of a time frame, that they figure out a mechanism and we are able to get a treatment.

I suppose it would be best if it's a treatment that we can easily get without needing our health services approval but i don't know how realistic that is.

 

[msf]

I think the most optimistic scenario is a treatment that gets rid of most symptoms of most people with ME in about five years.

 

[Justin30]

Most optomistic = maybe some defined subsets in 7-10 years with therapeatic treatment. We are incorrectly subsetting and we do not have one center of excellence yet. Until this happens...........and I dont just mean like a small facility with a ME Dr I mean one that houses all specialties but all focused on ME to prevent the Silo Affect that is hapening all over the place in this disease.

15 years before = for new drug development and therapy for a substantial portion not all

I hope they learn how to use stem cells to regenerate the damage or switch genes on and off.

 

[paul80]

So you think 2 or 3 years for the scientists to crack this is fantasy? I was thinking 5 or 6 years as a pessimistic view but i suppose there's the chance no one will get any funding and that could make things really slow.

 

[msf]

Good point about the siloing going on Justin. To clarify, I think there will be a partial cure for most patients in 5 years, but I do not expect everyone to have recognised as such by then, not even in the biomedical ME world. So the partial cure will be available to those who recognise it as such and have the money to pay for it (sounds a bit religious, but I guess I am trying to prophesise in a way).

 

[alex3619]

We could crack the puzzle any time. This year. Or twenty years from now. Using an established drug therapy and repurposing it will take at least five years. So if we solve the puzzle, at least for a subset, later this year, then expect approved treatment 2022 or later. Probably later. A new drug could take 10-15 years. This presumes that the findings are rapidly replicated too, but given funding and political will there could be additional delays of many years.

Treatments might be available very very soon. Years at most. Yet full cure may remain elusive for a very long time. Rituximab might be on its way in just over two years.

I cannot predict when the breakthrougths will happen. I can only say that the odds keep improving, and that I have hopes that the big data approaches will finally lead to better and more focused research questions being asked.

Our odds go way up once a reliable set of biomarkers are found, both diagnostic and outcome biomarkers.

 

[Sushi]

We could crack the puzzle any time. This year. Or twenty years from now.

Funny to see this thread today as I woke up with a new mind-set--there is a slight possibility that I might actually get significantly better! I had more or less accepted that the rest of my life would be much the same as it is now--"relatively" functional but with a huge functional limp. The thought that some practical answers might come along before I kick the bucket is a revolutionary thought.

Not getting any emotional investment though, but just the dawn of that thought kind of knocks me over.

 

[Justin30]

Good point about the siloing going on Justin. To clarify, I think there will be a partial cure for most patients in 5 years, but I do not expect everyone to have recognised as such by then, not even in the biomedical ME world. So the partial cure will be available to those who recognise it as such and have the money to pay for it (sounds a bit religious, but I guess I am trying to prophesise in a way).

I agree with people that have the money to pay at a 5 year point assuming funds become made available and a Center is built.

 

[Justin30]

@alex3619 makes very valid points...you never know when something will pop up.

I think for part of the ME population the ones with Neuro Issues and the like that MS type treatments with: wiping out the immune systom then rebuilding it with stems cells like they are doing in MS and Lupus sounds promising.

I also think that as stem cell therapy improves that using it to turn on and off genes and repair damage done by these types of disease looks promising.

My final thought is that it not a one size fits all cure. It will be personalized more in this disease than any other with a combination of therapies to restore health.

I will not share why I think that we are where we are other than funding..which is a big part of it.

Some people with whatever they have CF, CFS, ME, SIBO, Autoimmunity stuff may find success sooner than later but if they have the true multisystemic ME I think unless a massive amount of money is pumped in with a ton of new researchers working as a team then no...years more

 

[Groggy Doggy]

I think some of us are already responding well to Ampligen and also repurposed drugs. But unless you are wealthy, since health insurance won't pay for the treatments, we are at the mercy of the drug companies. Are they willing to make the investment to pay for the phase 3 double blinded FDA trials when we don't have an agreed upon biomarker yet? I doubt it. So if we want to speed things up, then its up to us to hold fundraisers to get private donations to places like OMF, who are leading the way.

 

[alex3619]

If you have enough money to afford treatment yourself, as a cash customer, then repurposed drugs could be available immediately. However to get government subsidized or insurance paid drugs takes a whole lot of research to convince them to pay for these.

 

[Groggy Doggy]

If you have enough money to afford treatment yourself, as a cash customer, then repurposed drugs could be available immediately. However to get government subsidized or insurance paid drugs takes a whole lot of research to convince them to pay for these.

Hi @alex3619

I have not been successful at getting my insurance to pay. But if you know a few tips, I would much appreciate it.

Thanks,

GD

 

[alex3619]

It takes years of replicated research for many insurance plans or governments to pay. Some high end plans do allow for off-label treatment. It depends on the plan. I do not live in the USA so maybe someone else can comment.