(Thanks to Dr. Gurwitt for allowing Health Rising to post his revised blog. I added the images and altered the title and headlines – Cort)
NO SIGNS OF LIFE AT THE BIG HEALTH AGENCIES
I believe only strong outside forces will cause HHS and NIH to move in constructive ways. Alan Gurwitt M.D.
Over four months have passed since the release of the report from the Institute of Medicine on February 10th of this year. In spite of the IOM’s efforts to spread their conclusions and thoughtful review and debate about the report on the part of patient advocates, CFSAC, interested clinicians and researchers, no consensus has been reached nor is there any signs of a significant response at the large federal health agencies.
The federal DFO’s (designated federal officers) come and go at CFSAC. While the CFSAC members keep trying, they are often ignored. There is not a peep from HHS and NIH. Except for some promising responses from the CDC, there is silence.
Dr. Francis Collins, the director of NIH says he is aware of the requests for greater NIH involvement but continues to do nothing.
Dr. Anthony Fauci, in office since 1984 as head of the National Institute of Allergy and Infectious Diseases (NIAID), continues to make it clear he wants little to do with ME/CFS. While many agree that the work on ME/CFS belongs in one of NIH’s institutes with research funding, not in the Office of Women’s Health, there is no person or group at NIH and HHS who is leading the charge and no indication so far that the leaders have heard the call.
Some individual lower level personnel have gotten the message and have done what they could, but an overriding indifference has prevailed for thirty years and there are no signs of motivation to change. I believe only strong outside forces will cause HHS and NIH to move in constructive ways.
Under present circumstances, it does us no good to sit and wait another four months for the government’s response. Whether or not HHS and NIH eventually respond, we patients, advocates, researchers and allies in the medical professions must review and change our tactics and directions, otherwise we will remain stuck in nowheresville. We have tried for years, with some success, to make our illness and cause known, but our struggle too often is ignored or is seen as unwelcome.
Alone, we are and have been vulnerable and ineffective despite the heroic efforts of our advocates and allies. To have greater impact we must supplement and reorganize our forces and improve our strategies.
So, where should we go from here? I believe that there needs to be a series of coordinated steps to build effective and constructive outside forces. As I see it, the possible steps are the following:
- Form Political Action Group – We have been told for years that the federal health agencies will only shift course when Congress demands such. We should establish a group to research and plan how to best educate and recruit Congress people from as many states as possible to act together in Congress. ME/CFS is a bipartisan cause and a very serious national problem. Coordination will be absolutely key.
- Produce Research Roadmap – Recruit a coalition of medical professionals, both researchers and clinicians, and institutions outside of the government to map out what are the key areas of needed research, both basic and clinical. To some extent this has already been done. The IOM and recently published P2P reports have outlined many of the key areas. The IACFS/ME, by bringing together researchers and clinicians from all over the world, has helped set the stage. The Solve CFS/ME Initiative has for years sponsored beginning research on important aspects.
- Create National ME/CFS Advocacy Organization – Form a planning group to think through the goals of a long overdue national ME/CFS organization, as well as its possible structure and staffing. It is only by creating such an alliance can the above steps be initiated and coordinated. This should take no more than a year.
- Create International Liaison Group – As part of the goals of the national organization a liaison group should be created to collaborate with patient groups and clinicians in other countries. ME/CFS doesn’t recognize boundaries. There is much to learn from one another. Australia and New Zealand have succeeded in educating a higher percentage of physicians. Norway is doing key research on whether ME/CFS is an autoimmune illness. The UK has many research efforts in process. In all these cases patient organizations have played a key part.
- Work Together – We must stop the pattern of fighting and undercutting among ourselves. This pattern has been an important reason for limited participation on the part of some advocates and contributed to our fragmentation. If we don’t all work together in a respectful manner to achieve common goals we defeat ourselves. We have large challenges to overcome but at times we have been our own worst enemies.
- Work with Urgency – Time is of the essence otherwise positive components of the both the IOM and P2P reports might die. Let us not miss the opportunities opened up by these reports
I believe the IOM and P2P reports are game changers if we utilize the achievable big findings and recommendations. Of course name and diagnostic criteria are important, but it is only with further research that both will become clear. The other big findings which we can use to propel our work now are:
- ME/CFS is a biological, not psychological disease.
- For many years patients with ME/CFS have been undiagnosed, misdiagnosed, mistreated and harmed by uninformed healthcare professionals and shamefully negligent medical educators and medical organizations. We must figure out what are the blocks to learning and how to overcome them, otherwise ignorance will continue.
- Children and adolescents present somewhat differently but have a better prognosis IF diagnosed early and well managed. Useful pediatric ME/CFS research is even sparser than for adults. That must change.
- There are huge gaps in our scientific understanding of ME/CFS in both children and adults as a result of a biased and indifferent federal government, which has almost totally failed for decades, to provide the necessary research funds and leadership. In response to the initiatives on the part of HHS and NIH to bring about the P2P and IOM reports, the reports should not be DOA (dead on arrival) and the leaders AWOL (absent without leave).
In summary, nothing will change until we change. We must not wait for the federal health agencies nor should we go it alone. We must take a series of steps. One step is to create a multi-pronged coordinated and comprehensive effort to recruit congressional support. We must also build a strong national coalition of patients, advocates, and professionals. We have many wonderfully informed, thoughtful, and active patient advocates among us but our failure to coalesce has created a major obstacle. The challenges are great so our efforts must be greatly smarter, focused, and more effective.
Failure to change our efforts and directions will doom us to remaining stuck. We should utilize our own capacities and wait no more.
Alan Gurwitt, M.D.
Dr. Alan Gurwitt’s opinions here are his own and do not represent the Mass. ME/CFS and FM Association and its Board.
(Alan Gurwitt is a retired psychiatrist who has lived with chronic fatigue syndrome for more than 20 years. Dr. Gurwitt was associate clinical professor at the Yale Child Study and the department of psychiatry at the University of Connecticut School of Medicine. He was also a Lecturer at Harvard Medical School. He is a board member of the Massachusetts CFIDS Association. He co-authored the 2006 Pediatric Case Definition and the IACFS/ME Primer for Clinicians.)