ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

[MeSci]

The problem is that when people have looked - and people have looked and it has been forgotten - if they are honest they found zilch. Zilch in the brain, zilch in the serum, zilch in the blood cells, zilch in the ... (At least in terms of replicated findings that is where we still are by and large.) That maybe because they are looking for the wrong things or because they are making methodological mistakes or it may be that the sorts of things you find in the other diseases just do not show up in ME. And when things do turn up a bit out of line, like cortisol levels, it does not seem to lead anywhere. However much you listen to patients if you cannot get any repeatable results in the lab that suggest a sensible hypothesis you are stuffed.

I meant to reply somewhere around here days ago but forgot, and am not sure if anyone else made this point - sorry if they did.

I think that the recent finding by Hornig, Lipkin et al of apparent different stages in ME producing different results should cause previous studies to be re-examined to see if the results can be stratified according to duration of illness. If they can, a lot of null findings may in fact show significance.

And ALL future studies, including those already in the planning stage, MUST show that they will obtain details of illness duration.

 

[alex3619]

Thanks for this post as I think it helps once again to show why all ME/CFS trials should have evidence based provable outcomes that people have recovered from ME/CFS and for it not to be based on the word of anyone, be it dr on the just the patient themselves without evidence of this being so.

Why cant there be a medical standard made for ME/CFS research trials?? Is there anyway we could get standards put into those who do our research???

I have proposed this before. It seems a logical step. Such protocols would have to be designed by committee, and that might wind up being the IOM, (sigh).

PS Standardized research will make research more credible, more comparable, and the less robust studies will stand out more.

 

[Jenny]

I have been thinking hard about that and was thinking more in terms of a budget of £20 million over ten years as a starter. What I would put top of the list is the identification of a ring fenced population based cohort in a region of the UK based on primary trawling of an entire population base using multiple sets of criteria but with a focus on patients with something like Canadian criteria disease (maybe IOM). I would set in place resources for longitudinal analysis of the cohort. I would then look to replicate basic findings like NK function, cytokine profiles, B cell function and antibodies, and HPA axis disturbance to see if these really are replicable and if so look at detailed mechanisms using the longitudinal analysis.

Does anyone know, have there been any longitudinal studies using detailed data collected at very frequent time points? One of the main features of ME is its fluctuating nature; indeed there seems to be a significant sub-group who experience relapses and relative remissions. I would have thought that a very useful thing to do would be to identify a small (N of around 20) clear-cut sample and do in-depth monitoring of changes in cytokines, B cell function etc say twice a week over a period of 6 months to a year. This might enable some potential predictors and mechanisms of relapse to be identified and then tested in a larger study.

 

[Jonathan Edwards]

I meant to reply somewhere around here days ago but forgot, and am not sure if anyone else made this point - sorry if they did.

I think that the recent finding by Hornig, Lipkin et al of apparent different stages in ME producing different results should cause previous studies to be re-examined to see if the results can be stratified according to duration of illness. If they can, a lot of null findings may in fact show significance.

And ALL future studies, including those already in the planning stage, MUST show that they will obtain details of illness duration.

Absolutely agree.

 

[Jonathan Edwards]

Does anyone know, have there been any longitudinal studies using detailed data collected at very frequent time points? One of the main features of ME is its fluctuating nature; indeed there seems to be a significant sub-group who experience relapses and relative remissions. I would have thought that a very useful thing to do would be to identify a small (N of around 20) clear-cut sample and do in-depth monitoring of changes in cytokines, B cell function etc say twice a week over a period of 6 months to a year. This might enable some potential predictors and mechanisms of relapse to be identified and then tested in a larger study.

Yes, that makes sense, although B cell function does not vary much over short periods. A B cell response occurs over a minimum of about 10 days and the only really meaningful thing we can measure is antibody which has a half life of several months. Still, there are subtler shifts over shorter periods that we are beginning to understand so I may be being pessimistic.