UK Grand Challenge

[IrisRV]

I cannot believe that this group would countenance using only Oxford patients.

I sincerely hope you are right. This research could be extremely useful if done right, and massively disasterous if done wrong.

I can't remember a single study in which the presence or absence of depression had a significant on the study results.

I'm not concerned about ME/CFS patients who have depression. Many of us do have depression for multiple reasons. That shouldn't affect objective biomedical data on the illness. I'm more concerned about the inclusion of psych-only patients without common ME/CFS symptoms. Too many of those could skew the data away from clear biomedical associations with ME/CFS.

I would feel a lot better about this particular research if I was certain they weren't using Oxford and they didn't have BPS people on the team. But it is what it is. There's nothing we can do at this point since they are not listening to patient concerns. We just wait and see. I'm hoping for the best, but it's hope, not confidence. I'm excited about the -omics aspect. We really need that kind of data -- as long as the data actually applies to ME/CFS and not the symptom chronic fatigue.

 

[Cort]

I sincerely hope you are right. This research could be extremely useful if done right, and massively disasterous if done wrong.


I'm not concerned about ME/CFS patients who have depression. Many of us do have depression for multiple reasons. That shouldn't affect objective biomedical data on the illness. I'm more concerned about the inclusion of psych-only patients without common ME/CFS symptoms. Too many of those could skew the data away from clear biomedical associations with ME/CFS.

I would feel a lot better about this particular research if I was certain they weren't using Oxford and they didn't have BPS people on the team. But it is what it is. There's nothing we can do at this point since they are not listening to patient concerns. We just wait and see. I'm hoping for the best, but it's hope, not confidence. I'm excited about the -omics aspect. We really need that kind of data -- as long as the data actually applies to ME/CFS and not the symptom chronic fatigue.

I agree that that - depressed patients without ME/CFS - is the danger. It's big danger in the UK......and that the possibilities are great - which is why we really have to have well delineated cohorts!

 

[Seanko]

*@Cort & @IrisRV There is no reason why informed people in the US can't discretely lobby the relevant individuals in the UK. The research community is not that big over here.

*Not saying everybody should do it but those who understand the science can make helpful points. This has happened with Nancy Klimas, Lucinda Bateman, Ron davis et al & calling for the PACE data to be released.

*Sometimes it's been a problem that re-telling has meant that more vocal activists has got some details wrong & they are easily picked off by the psychiatrists who believe it's mostly "all in the mind". You will know that one well known person has a website devoted to correcting people & polishing his public image.

*The patient community is lucky to have people like @Simon who are well informed and can circulate accurate information.

 

[IrisRV]

Not saying everybody should do it but those who understand the science can make helpful points. This has happened with Nancy Klimas, Lucinda Bateman, Ron davis et al & calling for the PACE data to be released.

And have the PACE trial researchers treated them with the respect they deserve and taken their helpful points on board? Not hardly, and certainly not with grace and professional respect. Will the Grand Challenge researchers want US researchers pointing out the flaws in their research plan? I doubt it. They didn't ask for the input of the US researchers. Wouldn't it be bad form for other researchers to butt in unasked and explain to the Grand Challenge researchers where their research plan needs changes. Yes, it would.

Besides, Klimas, Bateman, Davis, etc have more than enough work to do here as it is. Many of them have patients to treat as well as research to perform. There's plenty of work to be done talking to the NIH and the CDC about their research programs. Why waste their time "making helpful points" to a group who hasn't listened to them in the past, and are unlikely to in the immediate future?

The only people who have any accepted reason to request changes to the research plan are the patients who are purportedly being studied, and the government funding the research. That means UK patients need to stand up for themselves and deal with this, not expect US patients or US researchers to handle it for them. US folks don't have clout there. UK cfsme researchers have made it clear that they don't intend to take the existing work of US researchers and clinicians on board, why should they suddenly be responsive to unrequested input on their new research plan from these same people? They haven't even accepted the IOM report as legitimate.

The patient community is lucky to have people like @Simon who are well informed and can circulate accurate information.

Indeed we are!

Perhaps @Simon is another in-country resource that might be heard -- a well-informed, intelligent patient with the ability to discuss the issues clearly and calmly. I'll bet you could pull together a good in-country lobbying team that might have some influence with UK researchers or with government agencies who could, in turn, influence the researchers.

I'm afraid this one is for you guys to handle. If you need scientific backup, you can find UK researchers to help. They are more likely to be heard than researchers from other countries. Jonathan Edwards has been heavily involved in ME/CFS issues, so he would be a good person to ask to lobby for you with the Grand Challenge researchers. No doubt there are others -- Newton, Bansal?

 

[Simon]

@IrisIV
I'm hoping patients will be able to have some influence on the Grand Challenge in due course

And when I have more information about it I can share, I will. An interview with a leading light in the Grand Challenge will be out soon, I'm told.

 

[tatt]

we do have some good researchers in the UK - Julia Newton for one - and they are/ she is involved in this. They also involve patients and carers to some extent at the conferences. Esther Crawley claims to be very successful at treating young people with ME and therefore it makes sense to involve her (and this is from someone who met her and disliked her). Davey Smith's involvement should rule out some of the faults of other research.

Could be a really good study. I coudnt go to Newcastle, might try and get to the next conference.

 

[tatt]

I haven't seen any details on Esther Crawley's claims - hence referring to them as "claims" but I assume she has something to back it up.

At the first conference patients and carers were in discussion groups with researchers. It was limited involvement - the topics were fixed in advance but with input from a few patients/carers but there were then feedback sessions. So I'd say it served some purpose - first it demonstrated that the patient community could provide a polite contribution, secondly the researchers perceived there was difficulty in recruiting people to studies and they learnt that many patients were keen to be involved but what the barriers were to participation. Not sure how much difference other contributions made or what happened at the second conference.

 

[IrisRV]

I haven't seen any details on Esther Crawley's claims - hence referring to them as "claims" but I assume she has something to back it up.

Her research is sketchy at best, imo. First, her patient cohort is questionable. She probably has more chronic fatigue (the symptom) patients than ME/CFS patients. I have also heard that she sometimes (often?) changes the diagnosis of patients with whom she is not successful. That puts her success rate claims in question. I'm sure there's more, but as a researcher, that's enough for me to conclude her research is poor at best.

At the first conference patients and carers were in discussion groups with researchers. It was limited involvement - the topics were fixed in advance but with input from a few patients/carers but there were then feedback sessions. So I'd say it served some purpose - first it demonstrated that the patient community could provide a polite contribution, secondly the researchers perceived there was difficulty in recruiting people to studies and they learnt that many patients were keen to be involved but what the barriers were to participation. Not sure how much difference other contributions made or what happened at the second conference.

That's good to hear! While it may not be all the involvement patients would want, the patients were heard, which is a big step in the right direction.

Do you know if the information the patients provided about barriers to participation altered the research plan? One of the concerns I have is that using the Oxford definition and then having barriers that prevent all but the mildest ME/CFS patients from participating leads to a cohort called cfsme patients, but which actually contains very few, if any, patients who would fit the CCC or ICC.

 

[tatt]

I don't want to defend Esther Crawley but you are right that she started off working on fatigue. She works with children and that is usually what would get a referral here.

I'd regard Professor Stephen Holgate as one of the good guys, very keen to facilitate patient involvement.

The research plan hasn't been publicised all that much.

The discussion about barriers to participation included some that you'd expect e.g. physical, emotional and financial costs of participating, lack of trust in researchers and some that are more specific to the uk and related to recruiting people through general practitioners or specialists in ME/CFS who may not communicate that volunteers are being sought.

There is an ongoing study of the most severe cases in one small part of the uk http://www.meresearch.org.uk/our-research/ongoing-studies/severely-affected-me-patients/ It's obviously very difficult to get the most severely affected involved in any study.

US researchers play an important role in influencing research here by attending the conferences, giving presentations and participating in discussions. Some US researchers are shown respect, others not so much.