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UK CMRC 2018 Conference held September 19 & 20 at Bristol
Jonathan Edwards
Senior Member (Voting Rights)
Sasha
Senior Member (Voting Rights)
But now I feel so bad for the PWRA...
Surely there must be a billionaire PWRA who'd want to get this done...
Dolphin
Senior Member (Voting Rights)
My guess would be that only a small percentage of people with rheumatoid arthritis donate to research. And just like with ME/CFS, a lot of people with significant resources don't donate to research. Perhaps some think they can get better if they just keep trying treatments.
I know in my country, if we waited until the superrich donated, we would have raised nothing or close to it (I remember that one wealthy person gave £500 when a parent donated their birthday to ME; we wouldn't have got the money otherwise).
I think if you can get as many people as possible donating rather than just thinking that it is the job of governments to fund all the research, more of the wealthy people will also donate.
I know I can probably sound like a broken record making such points.
Sasha
Senior Member (Voting Rights)
I thought that RA tended to hit people later than ME/CFS, and that more PWRA would have had a chance to earn/inherit their billions by then. And RA must surely be like ME/CFS in that once you've had a few years of trying useless treatments, you'd want to put all your resources into research before you wasted any more of you life being so ill...
Dolphin
Senior Member (Voting Rights)
If people with ME/CFS even gave 1% of what they spent on treatments, that would be great. It could be thought of as diversifying your assets, rather than putting all your eggs in one basket. [Unfortunately, that doesn't happen with the majority of people giving nothing].
Indeed, an ex-member here wrote an aggressive message to me when I suggested the 1% idea (to nobody in particular) a number of months ago (their message also got a number of likes, which was a bit frustrating and disappointing; the aggressive message meant I lost a number of hours sleep that night, but I'm not prepared to be silenced).
Sasha
Senior Member (Voting Rights)
I agree - as many of us should be giving who can, IMO. Sorry you had aggro over this.
I still do wonder why the very rich don't spend more on this, though, in any disease.
Dolphin
Senior Member (Voting Rights)
I heard that the Barclay brothers paid for a lot of the research by the Behans and related teams 20-30 years ago.
Lord Sainsbury funded The Linbury Trust. Unfortunately a lot of the ME/CFS research they funded was biopsychosocial.
A number of wealthy individuals have funded research in the US. For example the Chronic Fatigue Initiative got $10,000,000/similar. I heard that Jose Montoya's got a multi-million dollar donation. The Whittemores gave a lot to various research charities.
Derek Enlander got $1,000,000 from an individual from what I heard but unfortunately I don't think it ever led to any published studies.
I recall the CFIDS Association of America thanked their donors over the years in the mid-2000s, and there were a lot of people who had given 5-figure sums and some had given six-figure sums
Edited to add: The Mason Foundation in Australia is from one family.
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Skycloud
Senior Member (Voting Rights)
) -phil_scottish_borders
Established Member (Voting Rights)
I've PMed you.
I can't stress enough, no one on the MEGA PAG has ever encompassed "the bps lot" in any way.
We had some resignations last year that were due to reasons personal to each member. Some of the reasons some people left (in 2017) are no longer there (I'll just leave that there....). We have also had resignations, sadly, due to deteriorating health, and life changing events (starting a family). As you know, MEGA is no more.
The recent CMRC conference was a success and the MEA have now written it up, which you can find here: https://www.meassociation.org.uk/wp-content/uploads/MEA-Report-CMRC-Research-Conference-2018.pdf
Jonathan Edwards
Senior Member (Voting Rights)
I thought this year that maybe I should let CMRC heal its wounds and spare them my annoying questions. But next year ...
The level needs to go up two gears on the left handlebar and then another two on the right. People who speak drivel should leave the podium shaking in their boots. That was always the way at Barts or UCH Grand Rounds. If you were speaking and George Simon pointedly turned his hearing aid off you knew you were done for. Those were the days when things got done ....
Sorry, getting a bit nostalgic there.
The level needs to go up two gears on the left handlebar and then another two on the right. People who speak drivel should leave the podium shaking in their boots. That was always the way at Barts or UCH Grand Rounds. If you were speaking and George Simon pointedly turned his hearing aid off you knew you were done for. Those were the days when things got done ....
Sorry, getting a bit nostalgic there.
All those involved need to take a look at the Video of the OMF livestream to see what the community is looking for from this type of event. If they want to have one event for researchers only to share unpublished findings that’s fine but there needs to be active engagement with the community and answering questions. And the presentations have to be shown to be relevant. Not good enough to have a superficially relevant sounding title fatiguish/painish/(god help us)medically unexplainedish. the people presenting have to have at least made an effort to educate themselves to a basic level about ME, be aware of the international context and be able to explain where their research findings could be relevant to research into the cause of ME.
Jonathan Edwards
Senior Member (Voting Rights)
I have not watched but I suspect it is more on target.
But I would not rule out my asking some pretty annoying questions there too. Like why don't your graphs have proper legends for the axes and variance indicators! Where was that methods slide...
Andy
Retired committee member
When will your paper be published would be one question I'd be asking of many at the OMF, but that is just my frustration with them
Sasha
Senior Member (Voting Rights)
IIRC, OMF had the facility for people to submit questions online during the livestream, which was a great idea (although it stuffed up a bit on the day, I think). They did indeed set a great example for patient engagement.
The CMRC should be aware that many of us who would like to attend the conference aren't doing so because we're too disabled. They should be doing everything they can to give us online access and to allow us to take part - including asking questions. If people are still coming out with BPS horseshit - or horseshit of any kind - it's unacceptable that we as patients don't get a chance to challenge them. It's our lives they're affecting.
It would be nice if null results were at least announced somewhere.
yes you should. I am a reasonably good judge of bad biopsychosocial research and can construct cogent arguments about that but not particularly good on assessing the benefits and drawbacks of this or that medical approach.
large donner
Guest
I actually thought I was dumb compared to scientists until I started comparing myself to scientists.
Then I realised had I religious beliefs when it came to accepting 'science' from scientists blindly.
Even if their conclusions were right I had no idea why I believed them so my belief in mainstream scientists were essentially faith based.
Now I don't believe ANYTHING unless I have the time to look into it myself which I don't. Therefore I either have no opinion on most things unless I am interested in the given topic and can examine all sides of the story.
From there I realised most data is either hidden, fudged, misinterpretable , or embellished so now I am back at square one, ignorant as fuck on almost everything except how bad the BPS theory on ME is.
Now nothing else would surprise me on any subject.
I do know however that its the establishment that is desperate to point at others as the perpetrators of 'fake news' and 'conspiracy theories' when the mainstream news is nothing but a bunch of talking head teleprinter readers sponsored by the advertisers and vested interests who prop up their TV channels, newspapers and even medical journals.
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