The tough criteria used by the AHRQ panel to assess diagnostic and biomarker studies ended up eliminating well over 90% of ME/CFS studies from consideration. That shocking result has lead some to suggest that the chronic fatigue syndrome field should be given something of a pass when it comes to reviews. They argue that the historical neglect of the ME/CFS field should be taken into account when review panels assess it.
So now we’re asking you what you think. Should independent review panels relax their criteria for disorders like chronic fatigue syndrome?
Perhaps it goes deeper than that? Perhaps they shouldn’t assessing ME/CFS at all? Perhaps they’re too unschooled in the nuances of ME/CFS to do it justice? Perhaps they’re too biased?
Or are they just what the field needs? Do they provide the push it needs to get it on the right track?
You decide…(see Poll at the end of this blog)
The Independent Review Question
The upset over the idea that chronic fatigue syndrome research was going to be judged by non-experts was understandable. ME/CFS is a controversial field. There’s certainly concern that an independent review will turn back the clock and label ME/CFS a behavioral disorder. Until ME/CFS is put on a solid physiological basis that fear is probably not going to go away.
It wasn’t surprising then, that when given a chance to undergo the kind of high level review that other disorders routinely engage in, many in the community balked. ME/CFS, they felt, could only be understood by ME/CFS experts. Letting outsiders in was like letting the fox into the henhouse.
A few, on the other hand, embraced the reviews. Dr. Ron Davis felt the chance to undergo a high level analysis was an opportunity not to be missed. The very fact that independent groups were going to be assessing ME/CFS to him meant we were getting somewhere. Dr. Bateman in what ended up being a rather lonely stance, also asserted that it was time for ME/CFS to stand on its own two feet.
But mistrust and fear drove many. Mistrust surely, for instance, drove the petition that requested the NIH not engage in an analysis, but simply declare that Canadian Consensus Criteria the definition for ME/CFS.
A feeling of invalidation may have played a role as well. ME/CFS experts, had after all, worked for years to put together the definition. It had garnered widespread support. Why didn’t the NIH just accept it? (Can’t we get any respect?)
The petition signers hoped that force of numbers would compel the NIH to do something it probably doesn’t do very often – accept consensus opinions in lieu of hard research. The NIH brought in a respected and presumably objective group to oversee the issue – a good idea so long as the group was trusted – but the trust was not there.
That mistrust squashed alternate interpretations. The IOM Workshop could have been viewed as a sign that the feds were finally getting serious about ME/CFS. Or as an opportunity to get the CCC declared the official definition. Or simply as an opportunity to get clear on what needed to be done to do that.
The P2P effort with no ME/CFS experts on board was even worse. Some advocates rejected the very basis of the P2P effort itself – the idea that it’s fruitful for non-experts in a field to give independent analyses of that field.
Mistrust of non-experts, in particular, seems almost endemic in our community. What do you think? Should independent reviewersbe allowed access to ME/CFS, and if they are, should ME/CFS be given a special break?
Arguments For Treating ME/CFS Differently Than Other Disorders
Because ME/CFS has been underfunded for years ME/CFS studies can’t be expected to meet the rigorous standards that better funded diseases do. The ME/CFS research field simply lacks the infrastructure – the money and academic environment – that fosters that. Reviewers should recognize that, give the community a break and use less rigorous standards to analyze it.
- Otherwise good research that doesn’t quite meet the standards ends up getting dismissed. This is particularly damaging with regards to the biomarker studies. The AHRQ could have identified promising areas like reduced aerobic capacity or dysfunctional natural killer cells. Then the P2P report could have recommended funding research into those areas. That’s probably not going to happen now. Somehow those areas should have been highlighted.
Arguments Against Giving ME/CFS a Break
- ME/CFS has to stand to stand on its feet and meet the most rigorous standards of medical research at some point. The sooner it can do that the better for everyone. Without efforts like these the field can be stuck in a rut for decades. In the end when studies don’t meet standards, the patients lose out the most. Even though they are painful these reviews are a good thing.
Outside review groups are a staple of medical analysis. Few researchers probably enjoy being put under the microscope by outsiders, but most probably acknowledge that independent analyses provide a foundation their fields can build on.
- It’s impossible to give any one disorder a break anyway. Once one disease gets a break others will demand one as well and the reason for having independent reviews will disappear. Because asking groups like the AHRQ to relax their standards is an impossible task, it shouldn’t even be attempted.
What do you think?
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone