Discussion in 'Action Alerts and Advocacy' started by Nielk, Sep 22, 2014.
Solve ME/CFS P2P draft review comment - http://solvecfs.org/p2p-draft-evidence-review/
Protest letter by Liz Willow - HERE
Well this is a very strange article. It seems to support the conclusion of most folks here:
And it continues to say the right things:
But then we get kicked in the head:
So even though P2P is "not appropriate" it is "what is needed". There's not much attempt to reconcile this contradiction. Their theory seems to be that the P2P "will illuminate the clear need for more funding" and Our Dear Leaders will therefore see the light and turn on the money taps.
A little further on the article starts licking boots:
I think most of us would agree the process is not "rigorous" but rather "uses rigid and arbitrary rules that favor the psychobabble researchers".
And of course, we must trust the "experts" and their lack of bias.
Although the Feds have treated us badly in the past, now we are supposed to believe they are truly sorry and won't beat us up anymore:
I believe they are trying to thread the needle by sort-of-but-not-quite criticizing the P2P while not jeopardizing the apparent special relationship between Suzanne Vernon and her NIH buddies.
@jimells - Excellent assessment!
The Agenda for the workshop is up.
Apparently the 20 minutes Bob Miller has early in the meeting is the only "patient perspective".
There is a Occupy CFS blog post from earlier this year about Bob's participation here:
If anybody can post the complete text from Jeanette Burmeister's FOIA efforts that have to do with Bob Miller it could illustrate this further.
It is obvious that they are not really interested in the patients' views.
One patient advocate slot to represent a million patients?
They just want to cover themselves so they can say that patients had a voice.
Dedra Buchwald and Niloofar Afari are hardcore psychobabblers who have published quite a lot together recently regarding CFS. Symptoms are maintained by psychological factors and inactivity, fatigue is the primary component, blah blah blah. They go on about perception of effort quite a bit and they believe that attributing ME to physical causes "probably" exacerbates it and results in greater disability. CBT and GET are the best treatments. Oh, and FM tender points are an indication of psychological distress They also seem to be happy with very broad definitions of CFS, and include "chronic fatigue" and "CFS-like illness" patients in their studies.
Daniel J Clauw thinks that pain and fatigue "characterize" ME, FM, GWS, IBS, back pain, etc, and are due to sensory processing problems (central sensitization). Basically psychobabble covered by a thin veneer of scientific theory. He's somewhat anti-drug and anti-surgery for people with osteoarthritis + FM who also have hip pain, since he believes their pain is likely to be in the brain. He's a fan of CBT and GET, and limited drugs for sleep, pain, fatigue, and depression.
Jennie Spotila has a post about the P2P agenda:
This is our worst nightmare!
Still time to protest everyone in the US. You can find a simple one click letter here.
Also join us on twitter using the #stopp2p4me.
There's a PR thread about the harborview clinic:
Dedra Buchwald works out of HVC
Anyone think what I'm thinking regarding this P2P thing?
Why do we have the same hand picked 'patients' representing us in all of these government lead projects.
Can't the Americans allow a bit of variance once and for all.
Are there 3 CFS patients in America, because as an outsider we always see the same people speaking for patients, and never any new people, and certainly never any critical and outspoken people.
I wonder why that is?
Question: Do they have to include testimony as part of the documentation????
If so what I would do as patient advocate is to include back what we think should have been included even if it is as attachment of your talk. So if you ever have to apeal the paperwork is there and has to be consider in refight?!?!?!?
I don't know much about legal mumble jamble, I would talk to a good advcate and the GWS community and see what is included and acceptable if we have to appeal.
Maybe @jspotila has some ideas.
I'm not entirely clear on your questions, but I'll take a shot. If I misunderstand your questions, please let me know!
You asked if they have to include testimony as part of the documentation. If you are referring to comments on the systematic evidence review, then yes that gets documented. The final report will be published to coincide with the P2P Workshop, and a few months after that AHRQ has to publish the comments they received and how the review team disposed of them (meaning whether they incorporated them into the final version or not).
If you are referring to the P2P Workshop, there is no patient testimony apart from Bob Miller's scheduled comments. This is not like a CFSAC meeting where people can speak for 3 to 5 minutes or submit written comments in advance. The only option we have for participation in the Workshop is to speak up during the discussion period. All those comments are part of the video record of the meeting.
Finally, we will have an opportunity to comment on the P2P Workshop report. Usually that is 15 days, but we've been told that it is being extended to 30 days. I do not know whether comments received on the draft report are published in any way.
I'm afraid I don't understand your question about appealing. Can you clarify what you are thinking about regarding appeal?
@jspotila I guess what I am trying to say, Imagine it goes bad. And we have to appeal or bring the decisions into questions after the fact (like the GWS had to go to a senate panel).
1) What documents would it be considered, only the ones already included or are we allowed new evidence?? If in a appeal we are not allowed new documentation, we need to find a way to jam them in there so we can argue studies that were not included, but we consider should of have.
I guess I am trying to be proactive, this doesn't look like it will end well to our favor. So as a community if it goes bad what will we do? Appeal? Accept and move on....
Is there any documentation or things that need to happen now, so we are not in a bad position to defend ourselves later.
You do not need to answer me, I just wanted to make sure that as a community we are thinking ahead and that when we look back, we don't miss any opportunity because we didn't know what was needed later.
I think one genreal question is how do we protest the agenda of the workshop?
I think it's not really a formal appeals kind of process that we will be facing, as much as a political process. One of the reasons I thought it was so important for people to submit substantive comments on the evidence review was to add to the record we will need to use politically. Same for the P2P Panel's report. Substantive comments on why they are wrong is really important. Then when we go to Congress (as has already started) , we can point to all the evidence and comments we've submitted trying to make the process constructive. This is also why it is so important for researchers to speak up in commenting processes. We have to be able to show Congress how much overwhelming evidence was simply ignored or disregarded.
Make no mistake, this is an uphill battle. And Congress does not like to get involved in substantive scientific disputes like ours. But we can show ample evidence of how we participated in a constructive way, in a way that was supported by strong science, and were still disregarded.
To @Kati's question about how to protest the agenda, write to the Office of Disease Prevention at NIH. You can use their contact form:
Or write directly to Dr. David Murray, Director of Office of Disease Prevention.
Thank you so much @jspotila, super helpful.
This has nothing to do about medicine or medical research. It has everything to do about politics.
We don't need another 'Nurse Ratched' doctor dictating the dismissive, arrogant and condescending policies toward the ME/CFS & Fibromyalgia patient groups.
You have to find the cause before you begin treatment. That's basic science. The psychosocial model has never been scientific. They cannot produce one organic biomarker to validate their hundreds of modalities that border on quackery. How many diseases have they managed to cover up over the years while patients suffered? Their manipulation and obfuscation of statistical datasets, refusing to release their datasets, magically inventing new labels for various behavior actions without any credible scientific research only reinforces a form of quack science that defies description.
Tell that to the LBGT group who were labeled with a psychological disorder only to be suddenly cured by a culture renaissance. Suddenly, their psychological maladaptive disorder disappeared without explanation for the 'disappearance' of their prior diagnosis. How about missing the mark on ulcers and MS (hysterical paralysis)? The psychobabblists will soon have their shamans, gurus, crystal and aura practitioners, eastern meditation experts, hypnotherapists, past lives regression therapists, EFT and many more weird and off the wall modalities practicing over a vulnerable patient population with their woo woo pseudo-science while shoving tranquilizers down the throats of patients at the behest of the pharmaceutical industry.
Their stupidity in unscientific methods that relate many of the causes of ME/CFS and Fibro to childhood sexual trauma, poor potty training etc. defies the common sense and clear logic and draws the conclusion that this is just junk research that fails to rise to the level of scientifically credibility.
Their smoke and mirror research and sleight of hand manipulation of depressed paptient cohorts to be included in studies with ME/CFS patients so as to skew the results to show improvement of their therapeutic technique of CBT and GET with depressed people not ME/CFS patients. 7 minutes on treadmill cures patients with ME/CFS. Try finding work with that criterion. It seems rather odd the clinical psychologist who have ME/CFS and are trained in CBT and GET seem to have the same difficulty that normal patients in achieving full recovery from ME/CFS.
Any normal person using simple common sense and logic knows that it is not psychosocial somatic disorder after reading about patients’ histories. A patient population consisting of nurses, doctors, medical researchers, clinical psychologists, professors, Gold Medal Olympians, NY Times Bestselling authors, teachers, lawyers, athletes etc. suddenly are suffering an extreme debilitating disease after a post viral infection or trauma and (note this) without any prior history of psychiatric disorders, one can only come to one logical conclusion...Occams Razor.
It is an organic disease. Any other conclusion is irrational, illogical and void of any common sense. Those who make such claims should seek psychiatric help for their intransigent position on defending a position that has no merit in scientific research. Better yet, turn in their diplomas. Hypothesizes constructed on a sieve of modalities based on tainted Freudian misogynists viewpoints and 18th century technology and science is flawed pseudo social science not medicine. For some strange reason, psychiatrists seem bent on taking a time machine back to that era to develop some of their off the wall idiotic theories.
Do you know that the majority of worlds top researchers at the most prestigious research institutes believe in an organic etiology for ME/CFS? …Ian lipkin, Jay Levy, Dusty Miller, Dr. Lights, Dr. Huber, Dr. Montoya, Dr. Ronald W. Davis, Dr. Mario Capecchi, Dr. James D. Watson, Dr. Mark M. Davis, Dr. Hornig, Jonathan Edwards and so many more.
In all reality, the patient community knows that this whole process is not about medicine. This whole process initiated by NIH is about politics straight from the Oval Office.
Further FOIA, investigations, whistleblower and other lawsuits will uncovered what is taking place behind the scenes of the NIH, CDC and the White House especially with the medical, health and disability insurance industry and their lobbyists.
Perhaps in the end, the psychiatrists and clinical psychologists will catch on to the new treatment rage of treating patients with mental health issues with Greyhound therapy. This is an expose of their so called professional standards. It is very similar to the treatment given to Gulf War Veterans.
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