Why i don't think there will be a cure for ME

[Treeman]

 

[JasonPerth]

Of there is to be no cure for MECFS
50% or Long Covid also has no cure.

If 50% of LC has MECFS post viral.

We need to hope the scientists and people in charge of funding start focusing on MECFS post viral, instead of trying to define LC and reinvent the wheel.

A Cure may be unlikely, but treatment to get us back to part time work to some degree will be appreciated. Just like many other illnesses and the treatment they get with large funding.

If 2million USA citizens and UK citizens are housebound/ and worse with LC. With those numbers growing. It will surely be impossible to ignore.

I guess the main issue is funding. Governments and Health parties have ignored and dismissed MECFS for so long, that to fund it now, and acknowledge it, will be hard for these people to swollow until they are replaced with new inovative people who havnt made mistakes in the past.

 

[Treeman]

2million USA citizens and UK citizens are housebound/ and worse with LC. With those numbers growing. It will surely be impossible to ignore.

I keep seeing this written, but yes it is possible to ignore. Just look at the history of ME/CFS. The same issues still exist, medical science is not at a point to explain it and until it does nothing changes.

I have posted a link elsewhere on all the trails taking place around the world trailing existing drugs to try on LC, the UK wasent on the list, they're doing very little.

despite that, I'm still hopeful the treatments will be found.

 

[Treeman]

I keep seeing this written, but yes it is possible to ignore. Just look at the history of ME/CFS. The same issues still exist, medical science is not at a point to explain it and until it does nothing changes.

I have posted a link elsewhere on all the trails taking place around the world trailing existing drugs to try on LC, the UK wasent on the list, they're doing very little.

despite that, I'm still hopeful the treatments will be found.

The thread highlighting the trails around the world

https://forums.phoenixrising.me/thr...-cfs-development-of-curative-therapies.90950/

 

[Treeman]

Whilst I wrote above that the UK is doing little, I was a ware it was doing something. The link below describes what they are doing after the Covid 19 outbreak and for covid (not specifically ME/CFS, but some expect any positive outcomes could benefit ME/CFS)

New research into treatment and diagnosis of long COVID​

• 15 new studies across UK to expand research that will support thousands of vulnerable people
• Nearly £20 million for research projects will help improve understanding of long COVID and identify effective treatments
• Projects include the largest long COVID trial to date which will involve over 4,500 people

https://www.gov.uk/government/news/new-research-into-treatment-and-diagnosis-of-long-covid

 

[JasonPerth]

Whilst I wrote above that the UK is doing little, I was a ware it was doing something. The link below describes what they are doing after the Covid 19 outbreak and for covid (not specifically ME/CFS, but some expect any positive outcomes could benefit ME/CFS)

New research into treatment and diagnosis of long COVID​

• 15 new studies across UK to expand research that will support thousands of vulnerable people
• Nearly £20 million for research projects will help improve understanding of long COVID and identify effective treatments
• Projects include the largest long COVID trial to date which will involve over 4,500 people

https://www.gov.uk/government/news/new-research-into-treatment-and-diagnosis-of-long-covid

Any idea what this study is about? Mentions becoming a Participant, its UK only and was looking for up to 25,000 people i think

 

[ruben]

Any idea what this study is about? Mentions becoming a Participant, its UK only and was looking for up to 25,000 people i think

There was something on Twitter which was a "spit test". I did participate

 

[Treeman]

This one? https://www.decodeme.org.uk/

I've taken part. Message them and see if you can join. They're looking for genetic based mutations to provide some insight, as I understand it.

 

[ruben]

This one? https://www.decodeme.org.uk/

I've taken part. Message them and see if you can join. They're looking for genetic based mutations to provide some insight, as I understand it.

Yes I have already taken part

 

[woozy]

I am either recovered or in remission. i have no idea how it happened but I had been ok now for 15 years. 3 years ago though, I had some sort of relapse for a few months. Then it went away again and I have been ok since. It should be possible to work out what is going on and cure this illness.

 

[Guwop2]

As Slushiefan said, there are new discoveries and advances all the time, at an increasing rate. AI has the potential to push that rate dramatically higher,

Has there been any activity on the AI front that people know of? I use some AI software for image based stuff (Stable Diffusion) and can see that the graphics cards that do the grunt work are basically very affordable (relatively speaking) and could promote a homebrew culture of medical research, should any of the biological research become open source.

 

[hapl808]

Has there been any activity on the AI front that people know of? I use some AI software for image based stuff (Stable Diffusion) and can see that the graphics cards that do the grunt work are basically very affordable (relatively speaking) and could promote a homebrew culture of medical research, should any of the biological research become open source.

The problem with AI is all the datasets are walled off, proprietary, incomplete, etc.

To be effective, AI needs good data. If we had detailed data on 100k people with ME/CFS symptoms, we could probably design an AI to diagnose and potentially even treat. We could possibly be successful before we even understood the etiology.

Instead, rapacious hospitals and hedge funds will set that back a decade while trying to flail around and figure out how to monetize their datasets. Under the guise of privacy (which is BS because that's not what HIPAA was for) and 'keeping us safe', they'll figure out how to squeeze more money from us and delay any real interventions.

It's a shame how much progress is being held back.

 

[forestglip]

Has there been any activity on the AI front that people know of? I use some AI software for image based stuff (Stable Diffusion) and can see that the graphics cards that do the grunt work are basically very affordable (relatively speaking) and could promote a homebrew culture of medical research, should any of the biological research become open source.

https://www.healthrising.org/blog/2023/10/21/ai-driven-chronic-fatigue-syndrome-clues/

This person has been looking for clues related to CFS with AI for years.

 

[JasonPerth]

This one? https://www.decodeme.org.uk/

I've taken part. Message them and see if you can join. They're looking for genetic based mutations to provide some insight, as I understand it.

You think i could join with DNA file already from 23+me?

 

[Treeman]

You think i could join with DNA file already from 23+me?

No. As I understand it, you need to apply and they send you a spit kit to use and return.