Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 19, 2013.
Just sent today's email.
Hope everyone has sent theirs!
Just don't hold your breath. “Whatever happened to that investigation we requested after the last CFS Advisory Committee meeting?” -- from Lips Are Sealed
Exactly! As Jennie Spotila states in her blog:
"The importance of this really can’t be overstated. Two members are on record saying that they have been intimidated for expressing their views. The public can have no confidence in any deliberations or recommendations made by a federal advisory committee where members are being intimidated by the Designated Federal Officer."
They seem to have no problems with ignoring us. These allegations are very serious. How can we even be assured that this is being looked at and in estivated when the repeated letters by advocates are ignored?
I'm utterly disheartened. I don't vote for the party Sebelius is a cohort of but it's ironic the party which normally would be accused of plotting our doom doesn't have its hands on this one.
I don't agree with the Affordable Care Act, heard a reminder the other day of how a central database of all our medical info is nothing to fear, it's secure. cough cough Bradley Manning and Edward Snowden type secure (and the security clearance vendor type secure, Aaron Alexis passed clearance). The cost of those 64gig flash drives is down to about $40.
Admittedly off topic a bit but sporting some old wounds from this board.
What they do and what we do are two different things. We do not have to accept any definition they come up with, and they are on notice that we may lobby against it in perpetuity.
This is shaping up as something which would make a good sequel to Oslers Web.
That isn't a prospect that I relish. An ounce of prevention is worth a pound of cure.
Which misses my point in part. We need to let them know that, aside from protesting that they are doing this, it will not end if they ignore the patient community, and trust will be broken for yet another generation of patients.
The problem is, Lex that time for us is in the essence. They have dragged this around for 25 years and I'm sure it wouldn't. Other them to play with this for another 25. We, in the meantime are growing in numbers and getting g sicker.
Are you suggesting that patients should add something specific to their messages? These statements are already being sent:
“HHS is going ahead with the IOM contract unilaterally, ignoring overwhelming opposition from the ME/CFS community. HHS is undermining the work of our experts while patients are suffering and dying. HHS must stop wasting precious time and dollars. HHS must stop wasting our precious lives.”
“Mistakes are being made, and it will only get worse if non-experts are given power to pronounce judgment on ME/CFS.”
“The climate of mistrust and bad dealing that these actions have created will haunt us for years to come, and a case definition that does not reflect the disease will set back research and treatment efforts for decades. None of us can afford for your Department to get this wrong.”
I am saying that an occasional message that they are losing the trust of the community, and that we will not accept research that is not appropriately conducted, is not unwarranted. Its just some ideas for people to add to their emails.
This is good but I think we need to be more pointed.
For example, as I said in another thread, the terms of the contract are critical. Can they reject using CFS as a label? Can they use ME? Can they create separate labels for idiopathic chronic fatigue, ME etc.? If not then the contract is for a biased construct.
If the terms of research are to take limited data and create a purely CFS diagnostic criteria, using personnel who are not very knowledgeable about CFS or ME, then the outcome will probably be both biased and unfit for purpose. I think we need to be even more clear than we are about this: it could turn out to be a colossal waste of money producing something that will never be used, or if used will be to the detriment of the patient community, and not to the benefit of HHS.
I do understand there are time constraints, I am just saying that there are additional messages that could be sent. I hope to be drafting something myself later today. I don't want them to in any way think we are not addressing issues of potential waste or potential bias.
After this time period has expired, whether we succeed in stopping it or not, questions need to be asked. This is unacceptable behavior.
You get prechosen outcomes by stacking committees, and limiting terms of reference. You can do the same with contracts.
I think Alex has raised an important issue here...
I think we need to make it absolutely crystal clear that if they create another fudge, then patients will never accept it.
Let's make sure that they are under absolutely no illusion that we will ever accept something that is foisted upon us without our consent.
I think it's important that we pre-warn them what the consequences will be if they repeat history and create another diagnostic fudge, because they haven't involved patients and experts in the process
I wrote something along these lines in my own letter, but I think I could have been even more explicit in stating that we will absolutely reject a fudge...
"Just as past projects have failed to satisfy patients, nothing will be achieved by the current proposed approach except a fudged compromise that will not satisfy the patient community. Unless the patient community is able to lead the process, or at least are fully engaged, then the patient community will remain unsatisfied and unhappy, and time and resources will have been wasted. Please do not repeat past mistakes. The patient community must be fully engaged for this project to succeed."
Does anyone think it is worth us starting a petition stating that we will reject any process that has not fully involved the patient community in the process? Even just a few hundred signatures collected over a week could have the potential to make a small difference. (I think I'll leave this for my US friends to consider, as you're more in tune with how your system works.)
Have you had your coffee this morning yet?
First cup down. Time to try and focus on emailing, ok maybe one more cup coffee.
Just sent my email for today - hope you all have!
Here's the CAA's take on the IOM issues...
(They seem to be in line with our opinions.)
ME/CFS Clinical Case Definition Debate
And I've just received this CFSAC email...
"We have heard the advocates’ concerns and trust that many have been addressed by the information provided in this email."
There seems to be some encouraging info in the CFSAC email, but the devil will be in the exact details.
For example, this is encouraging:
"the committee will distinguish between disease subgroups"
"The IOM will ask interested parties, including expert clinicians, researchers and patient advocates, to make suggestions for nominees to the committee."
Bits I don't like:
"the 2007 NICE Clinical Guidelines for CFS/ME"
Thank you Bob. You are fast. I'm just reading the e-mail too. A lot to digest here.
A very good idea via Twitter:
"We will need landslide nominations for Lenny Jason and Elinor Stein for the behavioral specialists. "
You can also try a Google Site Search
Separate names with a comma.