Discussion in 'Action Alerts and Advocacy' started by Nielk, Dec 9, 2014.
The final evidence review has been published HERE.
At least it specifically recommends that the Oxford criteria not be used for research.
And as a final paragraph, the following isn't bad!
"Studies should report findings according to important features of ME/CFS, such as postexertional malaise, neurocognitive status, and autonomic function, to identify subgroups that may respond differently to specific treatments. Studies also need to report harms more completely to help identify patients negatively affected by certain treatments. Given the devastating impact that this condition has had on patients and families, researchers planning and developing trials should consider involving the patient and/or advocate voice so that future research is relevant and meaningful to those affected by ME/CFS."
So this isn't a disease characterised by various symptoms, it's a "condition" characterised by "manifestations" and "changes" and "responses". Language matters. This reads like something drafted by a team of lawyers, not scientists.
Despite a few points that are good, they still give way too much weight to poorly designed CBT and GET studies.
There will be a patient protest tomorrow against the P2P - http://www.meadvocacy.org/disabled_americans_protest_us_national_institutes_of_health_s_p2p_meeting
Yes, if you go back to the CFSAC DHHS website, there were multiple presentations about it.
Also; quote from: http://www.ichelp.org/page.aspx?pid=747
"National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH), is sponsoring a new and novel research study called the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. The NIDDK MAPP Network is conducting research to help better understand the underlying causes of IC and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). MAPP embraces a systemic—or whole-body—approach by investigating potential relationships between these two urological syndromes and other overlapping conditions commonly seen in IC and CP/CPPS patients, such as irritable bowel syndrome, fibromyalgia, vulvodynia, and chronic fatigue syndrome" [End quote]
In fact, Dr. Jordan Dimitrakoff was on CFSAC because he was an investigator of MAPP and his role was to potentially provide ideas about how MAPP process, analyses, etc. could be applied to ME/CFS. However, for a while, I tried to find out exactly how many patients with ME/CFS were enrolled in MAPP (i.e. they had both ME/CFS and chronic pelvic pain) and came away with the impression that it was practically zero. Now this meeting, no one is saying MAPP includes ME/CFS patients but I don't disagree that the way MAPP was organized, researchers recruited, etc. may be helpful for ME/CFS.
What I would suggest is people concentrate on the executive summary if one is provided. That is what most busy clinicians, researchers, policy makers, etc. will read rather than the whole document.
There may be a lot more ME/CFS cases than they realise in studies like MAPP. See, for example, this study
I also think they have been quite mindful of the potential distinction between CFS, CFS/ME, and ME.
no intervention trial used an ME case definition , and
Most of the intervention trials used the Oxford (Sharpe, 1991) or CDC (Fukuda, 1994) case definitions for inclusion and the results may not be applicable to patients meeting case definitions for ME.
This is long overdue and very welcome:
future research should retire the use of the Oxford (Sharpe, 1991) case definition,
I regard this in particular as a huge win for us:
It is almost like they have been reading my rants about this very issue.
I have only done a quick scan of a handful of sections, and don't have the reading capacity to do much more. But I am pretty happy with what I am seeing so far. I don't think we have anything to fear from this report. Quite the contrary.
In particular, I see nothing much in there for the PACE team and their whole CBT/GET psycho-drama morality-play approach to be too pleased about. Quite the contrary.
Thankfully @Sean , all those comments that many of us made regarding the draft report HAVE helped to correct the errors, and finally, maybe have a governement issued report that shoots holes in the PACE trial!
Now, if only we could be gaurenteed that the whole P2P process will result in more funding dedicated to the biological understanding and treatment of this illness, maybe we could cheer.
I think it is fair to say that a lot of hard work by a lot of people over many years, is finally starting to pay off.
I think we need Congress for that, unless we can get them to move us into an Institute with available funding. That would be a useful thing to ask DHHS: house us in a regular Institute like any other proper disease.
Totally agree regarding the so many who have worked for yrs to dispel the psychological based conclusions and hope you are right about it starting to pay off!
I think this an example of how influencing and educating is often the best strategy when the government wants to do something. It's so hard to get the big elephant to move, to act. Once it starts moving, we don't need to tell it to stop.
Also, the federal agencies don't like to stick their neck out on making decisions without a study and a report to show their actions are well-founded. They can't just do what makes sense, like a doctor or any private group can. Before they reject or endorse anything, or chart a course, they must be able to show their decision is based on an unbiased review of the evidence. This is why there are over 1,000 committees in Washington. This is why the FDA did a committee before deciding on Ampligen. This is why they contracted with IOM. This is why, before they make any declarations on what type of studies to approve or what criteria is best for research use, they did this committee.
Don't you imagine they are getting some pressure from those with the psychosocial theories to ME/CFS? How do they respond to these medical professionals when explaining why they made whatever decision they made? They can't point to a large medical professional organization of certified specialists to back them up. All ME/CFS expert are self-declared or patient-declared with no specialized training. The psychosocial theorists can also declare themselves as experts.
The question is whether we recognize these limitations government officials have and work within the framework of what they can do or oppose it because it's not enough or because they aren't using people we want them to use or not going about it the way we want.
Do we consider opportunities to create more allies, more people who understand our plight! Or do we allow fear of other peoples' bad deeds?
To get progress, we must courageously get out of our reliable closed circle and influence and educate those with power and access.
From what I've seen of the report I thought it seemed like they were rushed and in over their heads. They'd have been better covering less ground and being more modest in their conclusions - they should have just said that they didn't have time to do a good piece of work answering the questions asked.
It seemed like some points from patients managed to get in to the final report. It read like something written by people who disagreed with each other, but didn't take the time to try to really argue things out.
There are quite a few little inaccuracies, eg:
(Also - what does 'normal' mean in the above sentence?)
It seemed like they didn't really get that likert and bimodal scoring are used for the Chalder fatigue scale, or that PACE changed the scoring for their primary outcome half-way through the trial. More importantly, they claim PACE shows improvement in employment data for CBT and GET, when it doesn't. I know someone who had written in to explain problems with their interpretation of employment data - it will be interesting to see their response to this when that is published.
They didn't seem to attempt to grapple with, or even explore, some of the most important problems around CFS.
Much mention of 'stigma', but only in the most general of terms, and as if the 'stigma' around CFS was entirely unrelated to the poor quality psychosocial research that is often tolerated here.
Having said that, a lot of CFS reports seem to be deliberately spinning the evidence, and I thought this report was just genuinely not very good. I guess that's reason to be hopeful that things are starting to improve?
PS: It could also be thanks to the work of people fighting behind the scenes that the report has been improved to being a slightly confused and incompetent mess with a few good points. If so, genuine thanks!
"Two patient advocates were also members of the Technical Expert Panel." it doesn't mention names?
Can someone please tell me what "self report of physician diagnoses" means? Does that mean reports coming from doctors about someone rather then what the patient themselves says?
I am not sure myself, but my guess is this means patient report of doctor diagnosis. Like, "my doc said I have CFS".
Yes, likely what Alex said.
You can also try a Google Site Search
Separate names with a comma.