Important and Critical Action You Can Take To Further the CFIDS Cause

In the next several weeks CFIDS patients, their families and their advocates will be lobbying the United States Congress to make important changes that could result in better research and treatment for our illness.

You can participate and help in this effort by taking a little time to write a letter to your Congressperson, Senators, and/or particularly important members of Congress who have control over CFIDS research.

Patient letter writing is more important than ever this year. Some of us have suffered for a few years, others of us have suffered for many years. Why? Largely because the federal medical research agencies have ignored and trivialized us.

Now the U.S. Centers for Disease Control is giving more publicity to our illness with some of their recent work. Just because the CDC is now paying a little more attention to CFIDS doesn’t mean we can trust them to correct the gross deficiencies that still exist. But we can take advantage of the current publicity by putting pressure on our lawmakers to promote the needed changes.

In this Alert, we will try to help you with what to briefly write and who to write to.

We are taking much of our information and action suggestions from Grassroots Action for ME/CFS, which was published by Co-Cure on the internet. Our thanks to both groups. Their links will be listed at the end of this Alert.

What We Are Asking For:

1. That Congress require the National Institutes of Health to form a permanent or standing committee to approve research grants for Chronic Fatigue Syndrome.

Right now, the National Institutes of Health (NIH) thinks so little of CFS and the harm that it causes patients that it has no ongoing committee of experts to solicit and review serious research into the causes and treatments of the illness. The NIH is the main federal medical research institute that grants funds for disease research. Currently only about $6 million is spent on CFIDS annually, whereas about $100 million goes to MS research.

Right now any CFS research proposals are reviewed only by Ad Hoc review panels. An Ad Hoc panel is set up for a one-time only review of current proposals. Little thought may be given to either the expertise or experts brought to the panel. Then the panel disbands.

What is crucially needed is a permanent or standing research committee which would carefully choose CFIDS experts to review proposals on an ongoing basis. This would establish CFIDS, not as an unimportant orphan child, but as a serious illness worthy of serious ongoing research. Researchers would know that NIH would be taking their research grant writing as important – and NIH would have to recognize their own committee and its recommendations with financial assistance. The lack of good CFIDS research has been substantially blocked by NIH’s refusal to set up a standing committee.

At this point, NIH must be forced by Congress to establish the Committee. This will only be done if enough of us tell our Congresspeople to do this.

2. That Congress use its power to get the Centers for Disease Control to formally adopt the 2003 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Case Definition and Treatment Protocols: A Consensus Document (available at http://www.mefmaction.net/documents/me_overview.pdf). The current 1994 CDC-Fukuda CFS case definition is harmful to careful and serious CFS research because it does not scientifically define the illness or the patients who have it. Such an unscientific definition prevents researchers from properly studying the illness.

3. That Congress require Health and Human Services (HHS) Secretary Leavitt to incorporate the 11 recommendations made by his Chronic Fatigue Syndrome Advisory Committee in 2004. The Advisory Committee has been comprised of some of the top ME/CFS researchers.

4. That Congress instruct the CDC to update the information it disseminates to reflect the World Health Organization classification (Myalgic Encephalomyelitis in the ICD-10 under the neurological classification G93.3) Note: currently the U.S. CFS code is listed under a symptoms and syndrome classification, which communicates that the illness is given less serious consideration.

How to Write:

We suggest you write a short letter and just list, in one or two sentences, each of the points above. Before doing this, in a few sentences, you could say how long you’ve been ill and how serious your illness is. You could also say how much of a personal and financial hardship the illness has caused you. You could mention that approximately 1 million people in this country are afflicted by CFS.

You could then say that after 20 years the Federal Government has made little progress in combating CFIDS because government agencies haven’t taken the illness seriously enough and have not adequately promoted research. Then give the suggested points listed above to help correct the situation.

Who to Write:

Which Congresspeople and Senators are most critical to write to? First, the Democratic Minority Leader in the Senate, Sen. Harry Reid, has been a CFIDS advocate over the years. He should be written to. Other activists on CFIDS in the Congress are: Congressman Patrick Kennedy (RI), Rep. Henry Waxman (CA), Sen. Rick Santorum (PA), and Rep. Tammy Baldwin (WI). These individuals could attempt to influence their colleagues.

In the House, we urge you to write to members of the Subcommittee on Health (http://energycommittee.house.gov/108/subcommittees/subcommittees.htm of the Committee on Energy and Commerce. This subcommittee deals with health issues.

In the Senate, the Senate Committee on Appropriations has a Subcommittee on Health
http://appropriations.senate.gov/subcommittees/labor/topics.cfm?code=labor
If any of your own Senators or congresspeople are on these subcommittees it is especially important to write to them. You can go to these links to see who is on these subcommittees. Write short letters and maybe if you have the energy you can simply duplicate your letters to as many of the members as you can.

Even if you can just write one or two letters to your own congresspeople, just do what you can. If each of us wrote one or two letters, along with all the other groups in the country, we could have a major effect.

Remember, we have to do what we can or things are less likely to change. We have to try to be assertive with our doctors by asking questions and following up. Lobbying Congress is really not so different; it’s just on a different level. If we can get the needed changes at the top, it will greatly influence the availability of treatments and the care and understanding we get from the medical community as patients.

For more information, check out the following links:

http://www.co-cure.org/Congressional_Action.doc

http://www.co-cure.org/Cover_Letter.doc

You can also find out the names and addresses of your own congresspeople by going to the Advocacy page on this site.