Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Response from Office of Disease Prevention April 14 2015

This is the text of the letter we received from the Office of Disease Prevention on April 14th, in response to our letter of April 3rd.

Dear Ms. Proskauer:
Thank you for your message and interest in the NIH Pathways to Prevention workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
In response to your comments and questions:
The recently released report from the Institute of Medicine should also be reviewed and considered by the panel. 
It is beyond the scope and charge for this panel to consider and incorporate the Institute of Medicine (IOM)’s recommendations within their report because the IOM report was released after the P2P workshop.  The panel can only consider materials available at the time of their workshop.
1.  How will the missing comments be retrieved? Can they even be found? (I would be happy to re-submit our comments if you cannot find them.) How many comments were not passed on, and from whom were they? (Would obtaining this information require another FOIA request?)
There were 46 comments that were inadvertently misplaced and not sent to the panel originally. All comments received by the NIH Office of Disease Prevention (ODP) are now on file and we have confirmed that all comments have been forwarded to the panel for consideration. The ODP cannot release the contact information for the individuals and organizations who submitted the comments because we did not obtain their permission to do so. The ODP is committed to ensuring that all public comments have been considered by the panel before completion of their final report. That is why we paused the publication process in order to give the panel as much time as it needs to thoroughly review and consider all submitted comments before the release of the final report. Once the panel has finished its deliberations, the publication process will resume, and the ODP will announce a new publication schedule on our website.
2.   Exactly what process will be used by the panel to reconsider their revision in light of these comments?
The panel chose to review the additional comments via a teleconference that they arranged.
3.  What actions will be taken to prevent any future occurrences of an error like this? How can the public be assured that their input will be received and carefully considered? 
For future P2P workshops, public comments will be posted online as they are submitted to enhance the transparency of this process and to ensure that all comments are received by the panel in a timely manner.
Jody Engel
Jody Engel, M.A., R.D.
Director of Communications
NIH Office of Disease Prevention

What is your response to the IOM Report? What were your earliest symptoms of ME/CFS?

"What is your response to the IOM Report?" (Survey conducted by Massachusetts CFIDS/ME & FM Association between Feb 32 and March 20, 2015)

"What were your earliest symptoms of ME/CFS?" (Survey conducted by Massachusetts CFIDS/ME & FM Association March 30 – April 18, 2015)

The results of these two surveys are now available.

IOM Report Survey. The 86 responses to the IOM Report survey represented a range of opinion from highly positive to dismissive, and most were thoughtful and showed a good understanding of the contents of the report. All of the responses were provided to the CFSAC IOM/P2P Working Group members (as indicated would be done in the Introduction to the survey), and a sampling/summary of responses is published here.

Early Onset Symptoms Survey. This survey received 800 responses and included many comments.The survey is not scientific, but the large number of responses makes it significant.The results suggest that the symptoms in the first few months of the illness (or what later turns into ME/CFS) are quite heterogeneous, with fatigue and cognitive impairment occurring most frequently. Clearly this is an area that deserves further study. If the disease (or the triggering events, such as infectious mononucleosis or a severe flu-like illness) is recognized early and proper treatment/management is provided (e.g. rest as needed), perhaps fewer people would develop the severe, chronic form which we identify as “ME/CFS.” Results are summarized here.

Update on CDC funding for ME/CFS

A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the Centers for Disease Control and Prevention.
This discovery launched a wave of emails, letters, and phone calls to key Senate staff from hundreds of people, including representatives of six different ME/CFS organizations. After this coordinated effort, we now know what happened – and we’re hopeful that $5.4 million in CDC funding will be restored for fiscal year 2016.
On Aug. 27, Senate Appropriations Committee staffer Chol Pak spoke with Carol Head of the Solve ME/CFS Initiative and Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association. Pak is largely responsible for the CDC’s budget in the Senate.
Pak said that back in February when the budget process began, he knew nothing about ME/CFS. The Senate was looking to cut a big chunk from the CDC budget, and they began hunting for places to trim. Pak hears from many patient advocacy groups during the annual budget process, but no one had contacted him about ME/CFS. A small program with no representation on Capitol Hill was a prime candidate for slashing, so Pak and his colleagues zeroed out the proposed $5.4 million ME/CFS fund in the Senate’s proposed CDC budget.
Pak is now well-informed about the illness. He read every email sent by ME/CFS advocates, and he responded to many. He understands the importance of continuing to fund the CDC’s “Multisite Clinical Assessment of CFS,” and he now knows that researchers are on the cusp of a breakthrough in understanding ME/CFS. Head and Proskauer left the meeting “cautiously optimistic” that the original $5.4 million in ME/CFS funding passed by the House of Representatives will be restored in the appropriations bill before the budget becomes law.
There is no need to send more letters to Senate staff working on the CDC budget. Letters to your Senators and Representatives about the general need for more funding are always helpful.
ME/CFS organizations learned a lot from these discussions – namely the importance of a constant presence on Capitol Hill. Pak expressed frustration that he had no information about ME/CFS when the budget process began.
Each February, Congress starts work on the next year’s budget, and this is when staffers responsible for the CDC and NIH budgets start meeting with patient advocates. This year, Pak said, he met with over 100 disease groups.
The appropriations bill then moves through hearings in the spring, and a final vote before the fiscal year begins Oct. 1. (Note that Congress has not met this deadline for several years, instead operating on a continuing resolution that freezes spending at the previous year’s budget.)
What are our next steps? Our organizations are going to continue close contact with House and Senate Appropriations staff responsible for CDC and NIH funding for ME/CFS. The message is simple: If they don’t know about us, they don’t know why they should fund us.
Thanks to #MEAction for permission to repost this article. http://www.meaction.net/2015/08/30/cdc-funding-update-the-importance-of-lobbying/

Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.