As I explain in this previous post, Mary Dimmock and I have sent a letter to Dr. Francis Collins requesting that he cancel the P2P Workshop and reexamine the best way to collaborate with the ME/CFS research and clinical community.
The P2P Workshop will use a panel of non-ME/CFS experts, selected by NIH, to make recommendations on case definition, research direction and possibly treatments. You can read more about P2P and what I’ve discovered through FOIA requests in the posts gathered here.
If you are worried about what P2P could produce . . . if you think this is bad science . . . if you want to voice your opposition to using non-ME/CFS experts to advise NIH on the direction of ME/CFS research . . . here is your chance.
Fax or email Dr. Francis Collins today and request that he cancel the P2P Workshop.
Use the template I have provided below, or write your own. Fax Dr. Collins at 301-402-2700 or email him at collinsf@mail.nih.gov. It’s simple, but it’s a start.
Please take a few minutes to do this today. If you have questions or comments, post them here or email me at jspotila AT yahoo DOT com.
Dear Dr. Collins:
I am writing to request that you cancel the P2P Workshop on ME/CFS . I believe that the P2P Workshop will not advance us towards the much needed ME/CFS research case definition or strategy, for the following reasons:
- ME/CFS experts have already pointed a way forward on research and case definition.
- The Workshop is examining the wrong disease: the problem of medically unexplained fatigue and not ME/CFS.
- NIH has not engaged or involved stakeholders in a substantive way.
- The Workshop decision makers are non-ME/CFS experts.
- HHS has made numerous contradictory statements about the purpose of the Workshop, so its goal is unclear.
I understand that you were recently provided with extensive documentation of these five points. Dr. Collins, I am not objecting to the P2P Workshop simply to criticize federal efforts to address the challenges of ME/CFS. Careful consideration of these issues raises legitimate concerns about whether the P2P Workshop will produce the good science and sound recommendations we need to advance ME/CFS research.
I hope you will give my concerns a fair hearing, and that you will cancel the P2P Workshop.
Sincerely,
[Your name]
For those who don’t have a fax machine, http://www.faxorama.com allows one to send faxes via email. And it’s free!
Sounds like a plan! All righty then . . .
Thank you, Jennie and Mary, for your important work on this. Just faxed and emailed my response to Dr. Collins.
Thank you, Jennie. Is there anyone we can cc, to increase the pressure?
Cc your Congressmen (we did!) and stay tuned for a separate Congressional action.
I have been diagnosed 26 years ago please make the government work for us most have been suffering too long.
done. Forgot to CC political people. Will do. THANK you.
I added a few words about my situation, but then sent the entire letter to Collins.
Don’t know to whom to CC a copy. Any suggestions?
Thanks for doing this, Kathy. Copy your Senators and Representative!
Wow. Thank you Jennie and Mary for your hard work!
OK, on emailing to senator and representatives, I cannot find their emails. Have to fill out long forms and there is a short box for comments. Is there a central list of email addresses?
Sorry, my exhaustion and brain fog are at play, especially with allergy problems (do others have this problem?), so it’s hard for me to deal with much.
Thanks, and appreciate the form letter and instructions — all the hard work.
Kathy, I’ve been told that Congressional staff prefer emails to come through those forms because they can track them in the system better. Alternatively, you could call the office and ask for the email of the health policy aide. But even if you can only fill out a form for one of your Congressmen, that is a big help! Anything you can do boosts the signal.
Usually those short boxes are greatly expandable. I usually write something in Word, copy, and paste into the box. It takes in full generally.
If there is any central list of email addresses, I am not aware of it (which doesn’t mean it doesn’t exist).
Billie
Done – thank you for making this easy for other patients!
Thanks all. When I get a burst of energy, I’ll send the letter with my comments to the senators and U.S. rep. I might be able to just copy my email and paste it in those boxes.
Done and done.
Regarding easily contacting congress:
When I was researching advocacy techniques a few years ago I ran across one or more tools for congressional campaigns. They may or may not be something that we could quickly fund but would be worth researching prior to a congressional outreach effort. I’d voulenteer but the arc of my illness precludes that right now.
Otis
Thank you, Otis!
Here are my additional comments which were inserted in bold into the standard text:
Believe me I have suffered a lot already from non-expert Doctors who willfully or otherwise are unaware and uneducated about this illness. It has made an already difficult life almost unbearable at times, as my condition has a complex multi-symptom etiology, that can be, and indeed, has been shown in my own case to have patho-physiological bases.
I hope you will give my concerns a fair hearing, and that you will cancel the P2P Workshop.
In fact I do more, I BEG you to cancel this Workshop. Suppose for one second, that you had a relative with a very rare form of cancer? Would you want their diagnosis, and hence research funding, insurance approvals, and many other aspects of their lives to be determined by a panel of non-experts? I believe not, as I cannot believe that anyone with any illness whatsoever would want their illness to be defined by non-experts.
Helen Wilby
(ME/CFS patient since Aug 2006, currently under the care of Dr.s Montoya and Chia, both of whom thankfully are recognized experts in their field..)
Well done, Helen. Thank you!
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