Thursday, October 31, 2013

CFSAC Nomination:
Jeannette Burmeister

Wouldn't it be great to have patient advocate Jeannette Burmeister on the Chronic Fatigue Syndrome Advisory Committee?  On her blog, she's been a fierce advocate and takes no prisoners when it comes to the government's mishandling of ME.  She's been nominated already by patient advocates John Herd and Eileen Holderman. Holderman fought the good fight on CFSAC; her tenure expires in the spring. 

Now patients could certainly use another strong patient advocate.  If you'd like to shower Burmeister with the support she's earned, email and tell the agency.

Tuesday, October 22, 2013

New ME Film:
Canary in a Coal Mine

Jennifer Brea and Kiran Chitanvis have just launched their Kickstarter campaign to raise $50,000 to make Canary in a Coal Mine, their documentary about ME. Brea, a journalist, came down with ME three years ago. An interview with Brea will follow shortly on this blog. You can share their campaign with others and view two terrific clips from their film here. When you click to get to the film clips, you'll see where you can donate to Kickstarter. 

Saturday, October 12, 2013

Don't Let Petition Fatigue Set In:
Contact Congress to Stop the IOM Contract and Adopt CCC

Patient advocates, including Mary Dimmock and Patricia Carter, sent this call to petition Congress to stop the IOM contract and adopt the Canadian Consensus Criteria. Patients no doubt are experiencing petition fatigue, but the signatures of 34 key ME researchers and clinicians on the petition to HHS Secretary Kathleen Sebelius to stop the IOM contract have been one of the most important advocacy moves of the past 30 years. Congress, unlike HHS and CDC, is much more likely to listen to the patients and these experts--and that's why advocates have drafted this petition to Congress.

Given the situation, despair is understandable, but despair won't change anything. This is usually the time that patients fold and let the government have its way--and patients get shafted yet again. This is usually the time when patients say maybe it will be different this time and try to work within the system, but so far that hasn't worked. This is usually the time when patients let the CFIDS Association, HHS, CDC and their minions say soothing things--but walk all over them. But this time can and should be different: This time patients have 34 experts supporting their cause, and that should make Congress take notice.

Here's step-by-step directions to contact Congress:

For U.S. residents only
Please contact your congressional leaders as soon as possible within the next two weeks and ask them to tell HHS to adopt the CCC and cancel the IOM contract. Please ask your family and network to do the same.

Instructions and a sample letter are below. Note that while the government is still shutdown, the web contact forms still work and the messages from constituents will be recorded. Sending in messages now will ensure that they are logged and available for staff members.

For U.S. and international members of the community
If you have not done so, please sign the two attached petitions calling on HHS to adopt the CCC and cancel the IOM contract. Ask your family and friends to do the same.

1. October 7, 2013 petition calling on HHS to stop the HHS/IOM contract and accept the CCC definition.

2. June 2013 petition calling on HHS to adopt the CCC and stop using the name ‘chronic fatigue

General background can be found here. Additional facts about the HHS/IOM contract for ME/CFS can be found here.

Instructions to email or call your congressional leader (U.S. only) 
1. Senators and members of the House of Representatives need to hear directly from their constituents. You can get the contact information for your congressional leaders at this website.

Type your zip code into the form and click on “Submit It.” The website will return the names of your two senators and one representative along with their phone numbers and a link to their contact form.

2. Click on the link to the web contact form for your senators and representative. This will bring up the web contact form for that legislative leader.

a. If you are using the sample letter, copy it into the box provided for your message.

b. Use “Stop the IOM Contract to Redefine ME/CFS" as the subject.

c. If the online form indicates that you need to choose the nature of the issue, select a choice dealing with healthcare.                                             

Sample message 
To be copied into the web contact form:

I am asking you to contact the Department of Health & Human Service (HHS) today and tell them to follow the lead of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome (ME/CFS) disease experts. Tell HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS.

On September 23, thirty-five of the leading ME/CFS researchers and clinicians wrote to Health and Human Services Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition. On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.

Regarding the IOM contract, the thirty-five experts stated,“[S]ince the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.”

The use of non-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-$23 billion dollars a year in lost productivity and direct medical costs.

Given the overwhelming opposition to HHS’ plans by both patients and experts, I am asking you to contact HHS today and tell them to follow the lead of ME/CFS disease experts. Tell HHS to cancel the contract with IOM. Tell HHS to adopt the Canadian Consensus Criteria.

For more information, see the following links or send an email to
– Link to Sept 23 announcement from HHS on the IOM contract.
– Link to Sept 23 letter to Secretary Sebelius from the 35 ME/CFS experts.
– Link to additional background.

Tuesday, October 8, 2013

Stop the IOM; Team Up with Gulf War Veterans

Patient advocate Wildaisy has started a petition to stop the Institute of Medicine (IOM) contract to redefine ME. If the IOM contract goes forward, chances are good that ME will go the way of Gulf War Syndrome, which was pathetically redefined at the beginning of the year as chronic multisymptom illness (CMI).  The recommended treatments included cognitive behavioral therapy, graded exercise and antidepressants--the same recommendations CDC gives ME patients now.

CFIDS Association Suzanne Vernon is supposed to be appointed to the IOM committee to study ME. On September 28, I wrote to Suzanne Vernon for a comment. She did not respond. 

Bona fide ME experts have already signed an earlier petition to halt the IOM and adopt the Canadian Consensus Criteria to define ME. Despite the impressive effort, there has been no response from HHS Secretary Kathleen Sebelius. 

If you want to join the effort to stop IOM, here is what the new petition says and the link to it:

"We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts supporting the adoption of the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS."

Many Gulf War veterans have been enraged by the IOM's redefinition of their disease.  If ME patients could team up with Gulf War veterans, perhaps their combined voices will be heard.