UK CMRC 2018 Conference held September 19 & 20 at Bristol

A whole year setting up that?! IOM a few years ago had a conference and a list of global priorities were decided in two days. In the interim Our charities involved could have sought patient Opinion on priorities in a short time frame. In fact MEA last year did one of their surveys on priorities for MEA research. Isn’t it just stalling and time wasting or a shocking continued lack of urgency.
Five years the CMRC has been going and they think now, they should start looking into what patients want, in the most laborious way possible with nothing else happening as we are waiting?. We just want decent research encouraged and funded really don’t we ？Norway seem to have been able to stimulate well received, worthy research , under way right now without all this. Jonathon Edwards did a post of pretty reasonable priorities a few months ago, anything like that would be a reasonable framework and then what are they even going to do with our priorities? This seems similar too much to the gap in time 2007-2011 when the MRC and expert group, under Holgate, spent all that time on priorities, which wasn’t exactly fruitful. To me, They do like to talk, but not to act.
The only positive I can say is that Charles Shepherd has said Holgate did give feedback on the meeting with MRC DOH which I didn’t see AFME tweet. We can hope something positive was said or it was so “ non event” it wasn’t worth tweeting. He also explained the polish “cryotherapy trial” was something used in inflammation conditions so it’s nice to see new people looking at treatment. I will copy his post if that’s allowed.

 

In July, I passed the 50th anniversary of becoming ill. It had a profound effect on me - I have become angry and impatient! They may be describing the disease some people have but not MINE and I am not alone from the things I read here. I DO NOT HAVE FATIGUE NEVER DID!!!!!!

I have fatiguability which is very different. I feel OK take 2 steps can't move any more, few seconds later can move again repeat. Sometimes I collapse with exhaustion but that is not fatigue.

I go to an MS therapy centre so know a lot of people and read the magazines. They often have articles about fatigue often taken from RA magazines or similar so presumably what they are talking about is fatigue as experienced in those illnesses. My friends accept it too so I assume it is accurate. It is very profound tiredness often simply because of the sheer physical effort needed to move damaged bodies. If they do too much they have to lie down, they cannot do what they want all the time.

Some people with ME get this sort of fatigue for the same reasons maybe but it is not the PEM of ME which happens without a reason. Dr Cho said that they could distinguish it because they were a different type of symptom such as headache, can't remember the details, but made alot of sense to me when I read it.

My friends with MS do not lose the use of their legs because they were adding up something in their heads.

After all these years why does no one in authority understand how our disease is experienced. Too much rest, indeed when we continually have to rein in what we do.

ANYONE WHO GETS PAID TO RESEARCH OUR DISEASE SHOULD MAKE DAMN SURE THEY KNOW WHAT OUR DISEASE IS AND HOW WE EXPERIENCE IT.

 

So sorry about your 50 years, @Mithriel.

 

I agree but how can they???

 

Can anyone tell us whether there was any data collected about whether the patients in this Pariante study had PEM?[/QUOTE]

Not that I saw.

 

There was discussion about seeking 10 million pounds or some such amount from MRC and other funders for some sort of consortium of research projects specifically related to ME.

 

Well they can use proper definitions for a start. If people don’t understand classic ME which comes from reading, meeting and listening to patients, watching unrest etc and using patient accepted criteria then I agree they shouldn’t really be doing more than general fatigue research. I don’t know his criteria use. Carmine Pariante attends the CMRC meetings and conferences so again that basis should be there but from what I’ve seen his primary interest Is MH and relation to stress and inflammation and as A psychiatrist, is he going to be working with ME patients at all?
I ageee with mithriel ME is ME not persistent fatigue.

 

It will be interesting to see more of the wording and enthusiasm of that from Holgate. That high figure sounds great except the “seeking” part leaves the time frame open and Its been Talked of a year now. Is it imminent or a vague goal.

 

Not that I saw.[/QUOTE]

There is a thread on PR from 2011 mentioning Pariente and an interferon study, also the CDC who were funding an interferon study too.

https://forums.phoenixrising.me/ind...nt-fatigue-induced-by-interferon-alpha.13799/

ETA: The above is a very interesting thread with many familiar ( and unwelcome) names. Pariente seems to have been working on the interferon stuff for some time. Why focus on it now after at least 7 years of research? Has he discovered something useful or is he recycling old stuff? Are there slides from his talk? I don’t do science unfortunately. Can anyone say what he said?

 

the whole page that link went to has now disappeared!

 

Many years ago, I think it was a chief medical officer's report into ME, something like that. Peter White walked out or would not sign the report because it was not psychological enough. It looked hopeful. They said that a neutral committee would decide what research should be done - so none of the people doing biomedical research were included, but neutral, still hopeful.

Then we discovered one of the neutral experts had published with Wessley. Everyone was affronted we could think he would not be impartial. Dr Derek Pheby asked that he be given money to go to patients and find what symptoms they actually experienced. But no, they gave money for the PACE trial instead.

Talking to patients has never been wanted because they might say awkward things like not resting very much.

 

My apologies - I had to run for a plane so had to make the closing remarks brief. What I could (should?) have said is that there is a narrow window of opportunity because of the confluence of new and exciting biomedical findings (some of which were shown during the CMRC Conference), the changing funding environment in the USA/Canada and the influx of new investigators and new techniques. This window might shut soon: these new investigators might not establish their careers in this area, low levels of funding might keep studies under-powered (and thus not definitive) and UK research might not be able to partner synergistically with USA/Canadian ME/CFS science. The CMRC Exec is making every effort to alert funders to this closing window of opportunity and will continue to maintain (and increase) pressure. A disease of such severity, affecting 250000 individuals in the UK (and their families/friends), deserves and requires tax payers' investment.

 

Thanks Chris, and for all your hard work on behalf of patients.

Will your comments be posted on YouTube with the other conference materials?

 

I think only the videos are being posted this year. There was a low download rate of other materials from previous years. That's what I am told.

 

I wish that the videos could at least be transcribed. I find it very difficult to take in much information via video, suspect I'm not the only one. Rubbish TV is a different matter, as you can sort of fade in and out of it (especially if you've seen it before, which most TV I watch these days I've seen it several times!). But if you're trying to understand things and follow arguments, print is so much easier. For me anyway.

 

I would hazard a guess that the content from previous years may have been less interesting to many patients - just a theory.

 

You must have so much resilience. I’m very fed up with the 20 year stretch I’ve done. It is infuriating that many researchers seem to miss what we’re saying about the nature of our experience.

Yes! How can we make this heard?! It is possible to live with ME without the symptom of fatigue (if you stay within your energy envelope). I’d be really surprised if any useful and specific answers come out of studying persistent fatigue. ME research money should not be spent on vague symptoms which cover many conditions and don’t necessarily fit well with ME itself.

 

Thanks for your feedback. I’m not sure I really accept the narrow window framing as that suggests an opening now that wasn’t possible before. You might be aware that the Gibson parliamentary inquiry called for £7m to be given to biomedical ME research by the MRC in either 2007 or 2009 so that equal funds was going on medical after they’d invested so much on behavioral interventions but they refused. MRC were also begged by the charities in 2011 to continue ring fenced CFS funding until the field was established which would have been the sensible decent thing to do but the MRC refused then , so basically the field even without today’s technology could have much advanced in U.K., eg PET scans were I think around then and I’m sure some work on trying to subgroup and understand severe ME could have been done before.

I’m not prepared to let the MRC off the hook for neglecting our illness and only fiddling around with it right back since the 2002 cMO report which should have been the trigger for a well resourced , wide ranging research program from them.

We have been hearing of meetings with the MRC and you alerting them to the window as you describe it. I as a patient, along with others have been writing to the MRC pointing out the desperate need for biomedical research into ME, the fact that this stigmatised, misrepresented field hadn’t progressed like many areas of medicine over a similar time frame and the need for increased action from them for years to change that. I really am keen to hear Are they soon putting in funds like Norway and America have already done a few years back now or have they just been asked and We are currently left waiting for the verdict?