Nielk
Senior Member
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Very interesting. In the question period just now he said that if you could get 1,000 patients' data, that would be a fantastic resource for scientists but that if you look on Patients Like Me (?), there are only 200 or 300 or something with CFS.
Phoenix Rising has 1,000 regular visitors...
We should be looking into this and seeing what sort of data we can provide and what's needed. I'd like to see leadership from one or more charities, ideally. This is going to need its own thread! The Invest in ME conference is coming up soon - that would be a good place to get it aired.
I love this idea that there are things that are actually within our reach as patients, if we can organise. Fundraising we can't do as well as the healthy parents of sick kids or the still-functional sick (such as people with early cancer) but the things we can do, we should crack on with.
Did anybody get that guy's slides?
You're right, we need to do this, it's a genuine opportunity. A lot of very good work has already been done in this area by people at PR, but more work is needed. The problem, I think, is resources because running PR is a huge task. If we as a community want it, we need more people to step up (even though that is really hard, I know...)
Masses of work has been done on this project within PR in the past, but it has been on hold [...] I'm very hopeful that we'll be resuming progress on the projects soon. [...] this is going to need volunteers to step forward from the community
Now that Bernard Munos (I thought he was great!) made this dramatic call for us to use Patients Like Me in front of such a big (internet) audience, I think we need some coordination quickly across organisations/advocates to stop someone just 'running off into the forest' with it and taking everyone down the wrong track - as would happen if people just went straight to that site now and started inputting their data, despite there being no appropriate disease category or a complete set of appropriate treatment and outcome options.
Nothing personal, but I disagree.who is this guy?
"the patient community has to do it"
Cannot be done by patient community. patients are seriously ill, we have no money. People have started organizations etc. the problem is the illness has so much stigma, the public do not donate, they don't care.
Patients have been trying for decades...
How much should one give to ME/CFS research? - what about a target of 1% of what one spends on trying to get better?
https://listserv.nodak.edu/cgi-bin/...CO-CURE&P=R3124&I=-3&d=No+Match;Match;Matches
We reap profits of our own if the drugs help our health, giving us a better quality of life and perhaps even helping us financially if they allow us to work.Having just skimmed through the transcript, so admittedly unable to do it full justice, I still want to express my disgust. Since when are people with cognitive impairments, minimal energy and funds, going to organize and conduct their own basic research? Why should we, alone among all other sick people, be expected to do this? And if we were somehow miraculously able to do all this, then would some drug company stoop to take the final step, and reap all the profits? No doubt of it.
We reap profits of our own if the drugs help our health, giving us a better quality of life and perhaps even helping us financially if they allow us to work.
Maybe some people think they can get better with non-pharmacological approaches. Me personally, I think I'm going to need pharmacological approaches. And I've already been housebound 18 years so prefer progress sooner rather than later (e.g. before I'm dead rather than afterwards).
Thanks.Good points, Tom. Some people do have money, though a lot do not through not being able to work or work full time and paying for a lot of doctors and treatments, which may not even have helped. As for your next point, that we would be reaping the profit, interestingly this didn't even occur to me as my brain seems to be stuck. Also, what I know about myself is that I only get worse, and I do not believe that anything they come up with, if they ever do, is going to enable me to recover.
Thanks.
I'm not sure I will recover, but I feel there should be a reasonable chance something can help me improve.
I remember Dr. Weir saying he did a small trial (n=10) of alpha-interferon (I think it was) around two decades ago . One person recovered but the statistician said that wasn't significant. This sort of thing both frustrates me and shows to me that developing basic understanding of the condition is important (i.e. if it could be isolated what sort of person responds and who doesn't respond). There are lots of elements to making this happen of course.
Nothing personal, but I disagree.
I'm afraid I don't buy that no patients have money when, for example, one sees the amounts some spend on speculative therapies. I previously argued it'd be great if patients gave 1% to research of what they spend trying to get better :
I think if more people with the illness and/or their family members donated or tried to raise money, a lot more could be raised money. A big problem is the small percentage of patients/families that do anything.
A lot of people find when they do fundraise that other people will donate. Fundraising these days can also involve online voting contests, nominating charities when buying with Amazon, etc.