In this guest post, Dr. Alan Gurwitt argues that it is time for ME/CFS advocacy to move on and move forward. The post first appeared on the website for the Massachusetts CFIDS/ME & FM Association, and is reprinted here with Alan’s permission.
image credit: The Poised Life
Four months have passed since the release of the report from the Institute of Medicine on February 10th. In spite of much thoughtful review and debate on the part of patient advocates to attempt to arrive at some consensus about an appropriate name and diagnostic criteria for this terrible disease, so far these efforts have changed nothing, nor will they make a difference without major changes in our tactics and attitudes.
The federal DFO’s (designated federal officers) come and go. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) keeps making reasonable recommendations but is often ignored. There is not a peep from HHS and NIH. Indeed, 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 nothing 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 an unfunded 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 of these huge “health” agencies have paid attention to the findings of the IOM report and the preliminary P2P report and plan to respond promptly and significantly. Some individual lower-level personnel have gotten the message and have done what they can, but 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 change.
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 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 seen as unwelcome. At times it seems like war for recognition and survival.
Alone, we are weak, vulnerable, and ineffective. We must supplement and organize our forces and improve our strategies going forward.
So, where should we go from here? I believe that there needs to be a series of coordinated steps to build an effective and constructive force. As I see it, the possible steps are the following:
- We have been told for years that the federal health agencies will only shift course when Congress demands it. 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.
- 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. This may not be hard to do as there is already much cooperation thanks to the IACFS/ME.
- Form a planning group to think through the goals of a long overdue national ME/CFS organization, its possible structure, and means of creating and coordinating the above steps. After doing so (six months to no more than a year), implement.
- Create a group 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. In all these cases patient organizations have played a key part.
- We must stop the pattern of fighting and undercutting among ourselves. Such has been an important reason for limited participation 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.
- Time is of the essence otherwise positive components of the IOM report might die. Let us not miss the opportunities opened up by the IOM report and important new research.
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 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 seem DOA (dead on arrival) and the leaders AWOL (absent without leave).
In summary, nothing will change until we change. We must not keep waiting 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.
Dr. Alan Gurwitt’s opinions here are his own and do not represent the Mass. ME/CFS and FM Association and its Board.
Since disputes between patients, advocates and other interested parties seem to be pretty frequent and on several issues, I think if a serious unifying advocacy organisation is to really take off then it will require a form of democratic legitimacy.
Obviously you cannot be hamstrung and financially weighed down by continual voting, but there would need to be enough so that those who invest in it feel represented on some level. Prior to a vote, people will have a chance to make an intellectual case for what they believe in.
The obvious big hurdles are the name of the disease, the method of diagnosis and beliefs about causes and treatments. Where possible it might be best to avoid advocating beyond what is mentioned in this blog and just sticking to the general cause of a ‘biological’ disease. I like focusing on the idea that we just need more of everything as opposed to focusing who gets the biggest slice of the little we have.
What is clear is that, we cannot change the system that has led to this neglect, but we can certainly get better at using it for our benefit.
Many things will begin to change if we can get a national organization put together with a strong leader, well respected by most. I even think that having such an organization will help change the way the disease is viewed by those in the HHS; it suggests in still another way that the disease is “real.” Anything you can do to get this off the ground, Alan, will be much appreciated and supported.
I’m on board. I’ve been thinking along the same lines.
Some consideration needs to be focused on the pending Presidential election. There are many crowd events as they parade around the country. Efforts to ask why there is no health parity after so many laws have been on the books and direct questions regarding why the heads of all these National Agencies are not stepping up with real help for us as promised. Hopefully the right names and faces directing these goals while the media cameras get their soundbites would make for a great documentary or public service announcements.
I think a lot of these are good suggestions for us to implement. I agree about uniting and focusing on goals, but we do have to agree on the major ones, even though on some other things we can disagree — i.e., the essence of a coalition.
For example, we all call for government research funding for ME/CFS, with
a suggested yearly amount. We call for the definition and symptoms that
should be used by CDC, NIH, HHS — as this blog and others have done.
We call for an end to the naysaying about this disease in the medical profession and government agencies, and the promotion of unhelpful, even dangerous treatments, i.e., exercise.
One other thing that should be done is that scientists, researchers, doctors, etc., should share findings and information and consult and collaborate. This disease is multi-system and affects many medical specialties and involves research on different aspects of the disease.
So, I’m for collaboration and sharing of findings and information much more than is the case. And this means globally, too.
I’m for action but I know our limitations. I know my own.
So, how can we, a population with physical limitations, work best cohesively and in the best direction and with the best use of our energy?
We can still differ on some things, but if we can agree on four or five issues/goals,
and push ahead, this could help.
We do have to show unity on the big goals and publicly, but airing differences in a diplomatic way based on issues and not on personality is inevitable. It’s how it is done that matters.
I also wish we could have a class action lawsuit against HHS, NIH, etc., for inaction and ignoring our disease and us. I don’t know who could do this pro bono, but we have some brilliant lawyers here, who could help frame arguments and know the legal issues.
I’m surprised there are only five comments on this so far!
As a UK PWME, the lack of a national US advocacy group seems extraordinary. I’m aware of the issues with the former CAA but going forward, it’s hard to see how much progress can be made without a credible national organisation.
If US PWME are successful in getting the serious attention of a congressperson, surely the first thing they’ll do is say, ‘Great! Put me in touch with your national organisation so I can get good information and work with them to get progress.’
Without such a group, I think it will be hard for congresspersons to help.
While I don’t disagree with anything here, the analysis is incomplete.
We keep telling ourselves that if we can just find the exact right combination of words and send them to exactly the right President/Congresscritter/agency official/journalist/celebrity then HHS will finally discover and understand that there is a very serious illness to be researched and properly dealt with. Even though HHS already knows the truth, we told to “Speak Truth to Power”. One might think that after 30 years these tactics would work, but obviously they haven’t so far.
Why?
It’s the disability insurers. They don’t want to pay benefits. As long as they can claim we have a “mental illness” they can cut off benefits after two years. They don’t even need a “mental illness” etiology – Sir Simon himself recognizes the illness has a biological origin, but that “mental illness” sustains it somehow, with Mind Magic, apparently. And that’s good enough for the insurers to justify cutting people off. It doesn’t matter that their claims sometimes can be overturned in court since few patients have the strength and resources to pursue litigation.
Until folks are willing to investigate and expose the connections between HHS and the insurance parasites, the policies will not change. Disparaging these connections with insults such as “conspiracy theory” may be a good way to derail any serious discussions, but it won’t change the truth.
I have nothing against sending letters to Congresscritters. It’s probably a good idea to keep doing that. But until we discover and treat the real causes of No-Research-Itis we are just taking supplements and making expensive pee.
Don’t take my word for it. What do I know about this stuff besides what others have said? Nothing. So I suggest starting with Cort’s great interview with Tom Hennessey, may he rest in peace.
http://phoenixrising.me/interviews-3/10317-2
I concur wholeheartedly. Where to begin? Find out how the National MS Org and others run theirs and how they began? I read on Medscape that prior to MRI’s , MS would be diagnosed based on whether the individual was heat intolerant by being put in hot water. Not so different as what we’ve experienced….
I agree 100%, Alan. Can MEAdvocacy.com be that national advocacy group? I am very impressed with how they have come together and worked so far. Congress needs to be our #1 priority.
Also agree with Jim Ellsworth that insurers are a powerful force stymying our progress; I would only add the reminder that it is not only the insurance companies, but perhaps more importantly the biggest insurers in the world: Medicare and Medicaid and Social Security Administration.