CMRC researcher/patient session report (by a patient who attended)

[ukxmrv]

http://glutenfreeadventuresandme.co.uk/2014/09/22/cfs-me-research-collaborative-conference/

1. Areas of focus we would like to see research done in

Prevention of CFS/ME
Formation of different CFS/ME sub types
Finding the part of the brain causes fatigue
Why pregnancy often causes symptoms to cease?
Complementary therapy
Interdisciplinary research linking different aspects of the disease
Sleep research
Care of sufferes
Matrix of symptoms to be created

 

[Little Bluestem]

bump, for others to read

 

[ukxmrv]

I was gobsmacked by the research priorities which is why I pasted them into the above.

 

[Esther12]

It looks like it was someone who hadn't really thought about this stuff before, and was just coming out with bits and bobs.

[edit: That sounds like I'm slagging them off, when really I'm sure lots of patients haven't thought much about this stuff.]

 

[Bob]

I've seen similar looking lists before when a bunch of patients are brought together to list their research priorities. If you get a bunch of patients who aren't well versed and informed about the science (unlike on this forum), then such a list can look (as Esther says) like it was written by someone who's never thought about the research possibilities before.

It's a personal bugbear of mine to see 'sleep research' in such lists. I know that we all have sleep problems and they can be a major problem for some, but is a sleep study really going to provide us with the biomedical answers to the immune system deregulation seen in ME? (Of course, some people with chronic fatigue might have a primary sleep disorder but they should be seen by sleep specialists, and primary sleep disorders have got nothing to do with CFS.)

Having said all that, "Formation of different CFS/ME sub types" is a sensible priority. So is "Prevention of CFS/ME" if it's real/sensible research and not the usual BPS stuff. (For example, Leonard Jason's large and detailed study following students to see which individuals get CFS after an ordinary mono infection, seems as if it may be helpful.) "Finding the part of the brain causes fatigue" sounds like it was possibly guided by a professional at the conference, or influenced by the conference presentations. "Interdisciplinary research linking different aspects of the disease" also sounds like it was influenced by the conference. "Matrix of symptoms to be created" doesn't seem like a totally useless idea, esp if done with a view to defining subsets, and finding biomarkers, but the symptoms are quite well documented already. "Complementary therapy" might seem a bit of a strange one to include, but patients often turn to alternative therapies, nutrition and vitamins when they have nothing else.

I don't think the list, in itself, adds anything to the field. Its usefulness all depends on who uses the list. Unfortunately the list is open to interpretation, and is vague enough to mean many things to many people.

 

[user9876]

Having said all that, "Formation of different CFS/ME sub types" is a sensible priority. So is "Prevention of CFS/ME" if it's real/sensible research and not the usual BPS stuff. (For example, Leonard Jason's large and detailed study following students to see which individuals get CFS after an ordinary mono infection, seems as if it may be helpful.) "Finding the part of the brain causes fatigue" sounds like it was possibly guided by a professional at the conference, or influenced by the conference presentations. "Interdisciplinary research linking different aspects of the disease" also sounds like it was influenced by the conference. "Matrix of symptoms to be created" doesn't seem like a totally useless idea, esp if done with a view to defining subsets, and finding biomarkers, but the symptoms are quite well documented already. "Complementary therapy" might seem a bit of a strange one to include, but patients often turn to alternative therapies, nutrition and vitamins when they have nothing else.

I don't think the list, in itself, adds anything to the field. Its usefulness all depends on who uses the list. Unfortunately the list is open to interpretation, and is vague enough to mean many things to many people.

I worry about the formulation of different CFS/ME subtypes. At first glance it does seem sensible; but, how do you do that? To me I would prefer it to be phrased in terms of hypothesis and test potential mechanisms. What worries me is if subtypes are just described in terms of clusters of symptoms or severity then this could lead to meaningless clusters. To understand subtypes we need clues to the different possible mechanisms and these in turn could lead to vastly overlapping symptoms.