An idea on how we might advocate for ourselves

[Judee]

@AdamS had the following post today including this news story.

I had a thought on how a large number of us could possibly advocate for ME/CFS. Here is the part of that news article that gave me the idea:

Prompted by financial incentives passed by Congress, the drug industry is hotly pursuing treatments for a throng of rare diseases. That has led to breakthroughs in several conditions, including cystic fibrosis and spinal muscular atrophy. Nevertheless, with a small number of subjects to study and relatively few people to sell new drugs to, many rare diseases are overlooked by doctors and scientists, hampered by a lack of resources and public awareness. (my underline)

ME/CFS is not rare though and my thought was that if perhaps if we could put that in front of some of the drug companies (letter writing from many of us) we could get them to realize the earnings potential in developing treatments for this.

We've been trying to approach this from a government to research to discovery to treatment pathway. What about reversing that somewhat? Drug companies lobby the government and have a lot of effect on policy changes and if they thought they could make money on this...?

I think it would take some targeted letter writing. Maybe we would need to focus on companies that already produce drugs that have shown some help to us...like Rituximab or Ampligen or the companies that manufacture the anti-virals.

I don't know?? Anyone else have some input on this?

 

[Wishful]

An actual clinical test might make the disease much less rare. I wouldn't be surprised if there are a lot more ME/CFS victims out there who don't know it because their symptoms aren't specific, plus others who are are misdiagnosed with something else and don't consider ME/CFS as a possibility.

I don't think the drug companies are going to fund basic research into diseases. Right now they can't work on a treatment (Profit$$$) because they don't know what to target, and can't provide clinical proof that it's working. I expect that they'll wait until someone figures out what's malfunctioning. They haven't figured out a way to protect research findings...yet.

Furthermore, I'd prefer that research resources go to studying the disease, which could lead to treatment from existing drugs or remedies (herbs, etc). Big Pharma might want to lock up the research and prevent non-profitable treatments so that they can sell expensive daily treatments. Big Pharma would probably prefer to block actual cures, since those are less profitable. No, I think involving Big Pharma is a bad idea.

 

[Judee]

No, I think involving Big Pharma is a bad idea

You do have some very good points.

One thing however, is something my chiropractor told me. Many of these syndrome type diseases don't get taken seriously by the medical profession until there's a drug they can prescribe specifically for that. Once a drug is assigned, all of a sudden doctors think the disease is real and not just psychosomatic.

I think that's why I was hopeful that this might be a good idea but I do understand the mindset of Big Pharma as you present it.

 

[Snowdrop]

If you're interested in moving things forward/advocacy why not contact #MEAction? They already have a lot going on and infrastructure in place to do things. I'm sure they'd be happy to hear from anyone wanting to help.

Although before presenting any ideas I'd take a beat to get up to speed with what's going on unless you are already aware.

https://www.meaction.net/2018/06/28/next-steps-a-letter-to-our-community/
https://www.meaction.net/groups/

 

[Judee]

An actual clinical test might make the disease much less rare.

Actually that is what I said. ME/CFS is not rare.

I don't think the drug companies are going to fund basic research into diseases.

but the article said it is Big Pharma that is:

hotly pursuing treatments

My thought being, why would they not be even more likely to pursue treatments for a disease that is affecting so many?

But again, I do understand some of your objections.

If you're interested in moving things forward/advocacy why not contact #MEAction? They already have a lot going on and infrastructure in place to do things.

I think that's a good idea too. Something like this would take organization; something my brain fog and fatigue would get in the way of.