Dr. Ken Friedman on Chronic Fatigue Syndrome (ME/CFS) Part III: ‘Just Our Beginning’ Success at the State Level, the Name Change and The Future by Cort Johnson

The Name Change

The CFSCC initiated a discussion regarding a name change. A Name Change Workgroup was formed and it gathered a lot of input from chronic fatigue syndrome patients and eventually a name change was recommended. In the end the new federal advisory committee (CFSAC) decided not to accept the recommendation and the effort died leaving a lot of patients upset. One could argue that it ended up being more divisive than helpful and eroded the confidence people had in the CFSAC. In retrospect was this a mistake?

I do not believe that the CFSAC erred in either once again discussing the name change or in deciding not to pursue the topic once it had been aired. I believe it would have been a mistake to have decided not to consider the topic. In my opinion, one of the responsibilities of the CFSAC is to discuss issues that are of concern to the patient community. Obviously, the name change issue was and still is of great concern to the CFS community. To have decided not to discuss the issue would have been more divisive and more upsetting than to discuss it and to reject pursuing it.

The Chronic Fatigue Syndrome name clearly feeds into a lot of damaging perceptions and many patients want it changed. On the other hand CFS as ‘CFS’ has built a track record in research, disability and other issues and changing the name could imperil some hard won advances – changing the name is clearly not a black and white issue. What’s your position on this issue now?

I further believe that the CFSAC was correct in deciding not to pursue a name change at this time. I am one of the few people who do not support a name change at this time. Patients may say that I do not understand the issue and the cruelty of having an illness with a name that trivializes the illness or demeans the magnitude of the symptoms. To them I respond that I do understand the consequences of this illness having a name which trivializes the condition. I do understand the consequences of having an illness that is not understand by the population at large.

Dig Deeper: Check out reports from the CFSAC meetings

We fought the administration every step of the way to permit her to matriculate through college with reasonable accommodations being made for her illness.

My daughter, as stated previously, became ill during her freshman year in college. It took her six years to complete college. More accurately, it took us (my daughter, my wife and me) six years to get her through college. We fought the administration every step of the way to permit her to matriculate through college with reasonable accommodations being made for her illness.

I personally believe that to change the name without a strong, scientific reason for doing so will do more harm than good. First, everyone will know that the name change was driven by patient demand. For what other illnesses do the patients get to choose the name of their illness? Will a name change really make a difference when it is known that the name was changed because the patients demanded it?

My position is that the name will be changed sometime in the future. The name will be changed when there is a scientific reason to change it.

Second, changing the name will create confusion particularly in the medical literature. Researches will need to know and be aware that the new name of the illness supersedes and replaces the older name. Therefore, when looking at the literature, you would need to search twice: once using the new name, and once using the old name.

If you change the name, and attempt to justify the name change by altering the factors needed to be present in order to be diagnosed with the illness (i.e. change the case definition) then all previous studies that used the previous case definition can no longer be used or compared to the current case definition. All those studies would need to be repeated on patients who fulfill the criteria of the new case definition

My position is that the name will be changed sometime in the future. The name will be changed when there is a scientific reason to change it. The name will change when we are better able to characterize the illness or understand the factor or factors that precipitate the illness.

Success at the State Level: the New Jersey Consensus Manual on Chronic Fatigue Syndrome (ME/CFS)

The production of the “New Jersey Consensus Manual For the Primary Care and Management of Chronic Fatigue Syndrome” in 2002 may be a watershed moment in the history of CFS advocacy. This is the first time advocates, researchers, educators, and state government officials collaborated to make a manual on chronic fatigue syndrome (ME/CFS) research, diagnosis and treatment available to every physician in a state. Given the dearth of advocacy in most other states this is a rather startling accomplishment – it’s like the NJCFSA is flying while everyone else is still trying to crawl. There are obviously some important lessons to be learned here. What happened in New Jersey?

I thank you for your kind words regarding New Jersey’s Consensus Manual. It is a tribute to the leadership and fortitude of the members of the New Jersey Chronic Fatigue Syndrome Association (NJCFSA) that the Consensus Manual was produced. The members of NJCFSA were underserved in terms of treatment provided to them for their illness. They recognized that physicians within the state knew little about CFS and less about how to treat it. They decided to educate physicians within the state. They decided that a Physicians’ Manual on CFS was needed and that the manual needed to be distributed to every licensed physician within the state.

The New Jersey Consensus Manual has become the CFS Bible of New Jersey.

The Board of Trustees of NJCFSA decided to pursue a political route. The Board decided to obtain an appropriation from the New Jersey State Legislature to create and distribute a Physicians’ Manual. They identified state legislators who were willing to support legislation designating the needed money and worked for passage of the legislation.

The enabling legislation was passed, funds were given to the New Jersey State Department of Health and Senior Services, who gave the money to the Academy of Medicine of New Jersey. The latter organization assembled a writing team to create the manual. Once the manual was written the Academy of Medicine mailed a copy to every registered physician in the State of New Jersey.

The New Jersey Consensus Manual has become the CFS Bible of New Jersey. Some physicians have the manual on their desk tops or in their bookcases and consult it as needed. The Manual is of greater significance to patients. They look to it as the validation of their illness. They look to it as the proof that their illness exists. Because the Manual is online and downloadable from the NJCFSA website, patients can easily consult the manual and, if needed, provide relevant information from it to their treating physicians. Perhaps most importantly, if a patient finds a sympathetic physician willing to treat his/her illness, the patient can refer that physician to the Manual for relevant education.

The Consensus Manual has changed the attitudes of both patients and physicians towards CFS in the State of New Jersey and has changed it for the better!

What has the response been to the Manual in New Jersey? Are physicians reading it and using it? Is there any way to gauge how effective it’s been in increasing physician awareness?

There has been no study of the effectiveness of the Consensus Manual in improving the care of CFS patients in the State of New Jersey. Quite frankly, I do not think that there will be one. NJCFSA has a lot of what it feels are more important projects to complete before we would undertake a retrospective look at the effectiveness of the Consensus Manual.

The Consensus Manual is one of the few primary tools in existence to guide a physician in the process of treating a CFS patient.

We do know that patients call the NJCFSA emergency helpline daily. Amongst the services that we provide is a list of physicians whom our member patients have found to be helpful. Many of these physicians do not claim to be CFS specialists but are rather physicians willing to treat CFS patients. These physicians must have obtained their education somewhere. Although we would like to think that our Manual was the source, or one of the sources, other sources are available: the Centers for Disease Control and Prevention and the CFIDS Association of America. Clearly, the Consensus Manual is one of the few primary tools in existence to guide a physician in the process of treating a CFS patient.

From there the Consensus Manual went to Vermont where the Vermont CFIDS Association spearheaded by Rik Carlson persuaded the Vermont state government to publish it and send it to the physicians in their state. Now PANDORA lead by Marly Silverman is trying to get the state of Florida to sign on. It is also being translated into Japanese. Do you see a reason why this shouldn’t be possible in every state?

It is true that the Vermont CFIDS Association, headed by Rik Carlson was successful in having the Vermont State legislature appropriate funding for the reprinting of the New Jersey Consensus Manual and for the distribution of the Manual to every physician in Vermont. Rik and I lobbied side-by-side for about one year to obtain the funding for the manuals reproduction in and for the State of Vermont.

Dig Deeper: Check out the Rik Carlson Interview

The Consensus Manual has changed the attitudes of both patients and physicians towards CFS in the State of New Jersey T

When the appropriation was made, the funds were given to the Vermont Department of Health which balked at the idea of printing and distributing a Vermont version of the Manual to all physicians within the State of Vermont. The Vermont Department of Health claims that such a distribution would be a waste of money. What has happened in Vermont is that the Department of Health has placed a link on its website to the Consensus Manual so that both patients and physicians can access it. The Department has also said that it would supply a hardcopy of the Manual to any resident of the State of Vermont who requested it.

Shortly after the appropriation was made, Rik Carlson identified an attorney to write a suitable “legal” chapter for the State of Vermont since patient entitlements vary state by state. This supplemental legal chapter is available for reading and downloading at the Vermont CFIDS website.

It is also true that I was contacted several years ago by a CFS patient alliance in Japan. They wanted the Manual translated into Japanese. In order for that to be accomplished (and also for the State of Vermont to reprint the Manual), I needed to negotiate the copyright release of the Manual from the three copyright holders of the Manual. The copyright release that I was able to negotiate permits the reproduction of the Consensus Manual providing: (1) The Manual is reproduced by a recognized, legitimate organization, (2) the Manual is reproduced in its entirety without any alteration, (3) the Manual is reproduced for educational purposes only, and (4) no profit Is made by or from the reproduction or distribution of the manual.

(Ken recently reported that the Manual is also being translated into Spanish.)

You’ve stated you’re ready to march state by state throughout the country to get make this manual available to physicians and chronic fatigue syndrome (ME/CFS) patients throughout the country. In a disease with a 20% diagnosis rate it’s not only morally important that these people get help but its strategically important for us – we need their voices! As Pat Fero said “we need them and they need us.” Yet statewide groups are hard to find and statewide groups that attempt to effect legislation are even rarer. Do you think this is a goal ME/CFS patients could unite around?

I am hoping that CFS patients realize that research, education and increased patient care are three primary needs of their community. Physician education is key to increased patient care. The Consensus Manual or something similar to it is clearly needed. So too is medical student education. As of now, CFS is not part of any medical school curriculum in this country, and efforts on my part, and on the part of the Chronic Fatigue Syndrome Advisory Committee to include CFS in the medical school curriculum have failed.

The federal government claims to provide and claims to have provided physician education in the United States. Through the CDC, a train-the-trainer program was developed and implemented to transmit the skills to physicians needed to diagnose and treat CFS patients. These materials are not only available through trained trainers, but are also available on-line, on videotape, and in hardcopy. Yet, the numbers of physicians partaking of these educational options seems to be dwindling.

The CFS community simply cannot afford to wait for the federal government to provide the needed funding. The time has come to initiate statewide action in parallel to insistence on a federal response.

The federal government also launched a “Spark Awareness” campaign for both the lay public and healthcare providers. Part of this campaign was the production and distribution of the “Physician’s Toolkit”: a series of pamphlets for physicians to read and one pamphlet to be given to their patients. How many of your readers have seen or been given the patient pamphlet from the Toolkit by their treating physician or any other physician?

While the CFS community cannot and should not give up on the federal government as a source of funding for the needed advances in CFS research, education and patient care, the CFS community simply cannot afford to wait for the federal government to provide the needed funding. The time has come to initiate statewide action in parallel to insistence on a federal response.

Clearly, addressing the concerns of the CFS community at the state level is working in New Jersey, in Vermont and in Florida. These are the three states in which I am currently working. I believe there is some renewed activity in Michigan where there have been patient conferences for the past two years and, this year, a healthcare provider conference was held for the first time. In addition, there is a private effort being undertaken in Nevada. These are all very hopeful signs, and I believe that these state initiatives will be interpreted by the federal government as signs of strength, organization, and commitment of the CFS community and embarrass the federal government into a federal response.

In my opinion, the federal rallying point for CFS patients should be the formation of a Congressional Caucus for CFS. This is an initiative started by P.A.N.D.O.R.A. in Florida led by Marly Silverman. The idea is to have a group of federal Congressman meet periodically to discuss the current state of federal assistance to the CFS community and enact federal legislation to meet the needs that are currently not being met.

Dig Deeper: Check out the 2007 interview with Marly Silverman

The CFS community is a large community that can command attention from its elected representatives.

CFS advocacy groups as well as individual patients can lend support to this effort by contacting their federal Congressman, requesting their support for the Caucus and, volunteering to inform their Congressman about CFS in general, and the impact this illness has had on them personally. The Department of Health and Human Services, which controls the National Institutes of Health and the Centers for Disease Control and Prevention are under the control of the administrative branch of our government and will implement only those policies and fund only those initiatives that the administration approves.

In my opinion, patient populations have little ability to alter the policies of the administrative branch of the federal government. Patient populations can, however, express their opinions to their elected federal officials and elected officials are sensitive to the concerns of their constituents. The careers of elected officials are dependent upon a certain level of satisfaction of their constituents. If the new CDC estimate of CFS patients in the United States is correct, and there are approximately 4 million afflicted individuals in the United States, and if we include those individuals who are concerned family members or caregivers for CFS patients, the CFS community is a large community that can certainly command attention from its elected representatives.

You’ve worked on the federal and the state level with regard to ME/CFS issues. It seems like you’ve made more progress at the state level. We have the Whittemore’s and the State of Nevada collaborating to build a $12 million dollar ME/CFS research/treatment center. Both New Jersey and Vermont have gotten state resources to publish the Consensus Manual. Is the state level easier to work at right now? Are state officials are more receptive to chronic fatigue syndrome?

I am honored to have worked at the federal level on behalf of CFS patients.

The responsiveness of the federal government to the needs of the CFS community is slow. The responsiveness of state government officials seems to be faster.

While serving in that capacity, I worked as diligently in that capacity as I possibly could have. I believe that what we accomplished was and is historic. I believe that the maintenance of a CFS Federal Advisory Committee is vital to focusing at least some of the federal government’s attention on the needs of the CFS community.

Nevertheless, the responsiveness of the federal government to the needs of the CFS community is slow. The responsiveness of state government officials seems to be faster. Perhaps because the province of state government is more local, state officials have more opportunity to address the concerns of local residents.

On August 28, 2007, I met with a staff member of U.S. Senator Patrick Leahy to discuss the needs of the CFS community. Although I was asking for Senator Leahy’s assistance at the federal level, the role of state government was included. We agreed that if any state should be able to address the needs of its CFS community, Vermont should be that state by virtue of its smaller population and, therefore, the ability to meet the needs of a smaller population. We agreed that the State of Vermont could be a leader in developing programs for its CFS patients and that the federal government, or more precisely Vermont’s elected federal officials, should play a supportive role in implementing the programs needed for CFS patients within the State of Vermont.

‘Just Our Beginning’ – The Future

When I talked to Dr. Fennell about how her colleagues viewed chronic fatigue syndrome (ME/CFS) she said there had been a real shift in their stance over the last five to ten years. Do you see that as well? Are your colleagues becoming more open to CFS?

I believe that there is greater awareness of CFS both in the general public and the professional healthcare community. In no small part, I believe this increased awareness is due to the facts that there is a Chronic Fatigue Syndrome Advisory Committee formed by the Department of Health and Human Services and by the “Spark Awareness” campaign currently being run by the Centers for Disease Control and Prevention.

While I would agree that there is increased general acceptance of CFS as a medical term and as an illness, I maintain that we have a long way to go in terms of increasing the number of patients being diagnosed and being treated

Unfortunately, the message of the Spark Awareness Campaign is to, “Get diagnosed, get treated,” and ends there! The false assumption made in that campaign is that there are healthcare providers capable of diagnosing CFS and capable of treating it. Perhaps the government’s unwritten, inferred game plan is to rely on the Centers of Disease Control and Prevention’s previous, “Train-the-Trainer,” program. That program trained healthcare personnel who could then run courses for physicians, nurses and other healthcare providers. The course’s curriculum covered the skill set needed to diagnose and treat CFS.

If that is the government’s strategy, it is failing for three reasons: (1) the number of courses being given to healthcare providers has dwindled, (2) there is a reluctance to permit such courses to be given, and (3) the official content of that course warns would-be CFS care providers that the care of CFS patients requires much more time than your typical patient. The implication of that statement is that if you cannot give the CFS patient more time than the average patient, do not be that patient’s healthcare provider!

Clearly, general acceptance of CFS as an illness by the general public is a step in the right direction. Clearly, general acceptance of CFS as an illness by healthcare providers is a step in the right direction. But neither of these encouraging steps provides better diagnosis and/or treatment of CFS patients and I have not seen any new initiatives undertaken by the federal government in the last five years that would improve the number of healthcare providers capable of diagnosing or treating CFS.

More important, in my opinion, is the realization of CFS groups throughout the country that they are not alone, and that they do have power. CFS groups are discovering that they have political power

We need programs in our medical schools to train physicians in training. We need continuing medical education programs at our medical schools for physicians in practice. We need the American Medical Association and the American Association of Medical Colleges to provide incentives to medical schools to provide CFS diagnosis and treatment training to physicians and physicians in training. We need to train other healthcare personnel into the effort.

At one point in time, while I was a member of the CFSAC, I explored the possibility of training dentists to become screeners for CFS. The rationale for this effort was the statistic that people in the United States are more likely to see a dentist than a physician. So why not have the dentists ask appropriate questions of their patients to determine if they are possibly exhibiting symptoms of CFS? The proposal was rejected!

(Editor’s note. Dr. Friedman was correct in his intuitions about the Train the Trainer program. He may have, in fact, lead the last training session of that program. The CDC obliged his request for the session only after his congressman stepped in. In the May 2007 CFSAC meeting Dr. Reeves indicated the Train the Trainer program had been discontinued due to lack of interest and expense.

The CDC is also reconsidering whether to continue providing talks and booths at professional medical conferences and or their ‘Grand Rounds’ presentations at medical schools because of very low response rates. The two hour self taught continuing medical education course on the CDC’s website appears, on the other hand, to have good response rates. The CFIDS Association of America stopped delivering the CMES in 2007 after deeming the the CDC’s approach too conservative.)

This interview has dealt with a lot of negative issues but there’s a good deal of good news; there are the successes in New Jersey and Vermont, the first media campaign ever put out by the CDC was, rather remarkably, focused on ME/CFS, the CDC has a physician tool kit and a physician trainer program, the CFSAC was re-upped, the press regarding ME/CFS has been very positive over the past year. There are a lot of issues facing the CFS community but is there a reason for some optimism as well?

I believe that there has been remarkable progress in the general acceptance of CFS as an illness in the past ten years

I believe that there has been remarkable progress in the general acceptance of CFS as an illness in the past ten years. In no small part, this progress was stimulated by extramural research grants and the Research Centers funded by the National Institutes of Health and the intramural research programs at the Centers for Disease Control and Prevention under the leadership of the William Reeves. It remains to be seen whether the federal government will continue with these efforts. It remains to be seen whether the federal government will continue to fund these activities at the current level, an increased, or a decreased level.

More important, in my opinion, is the realization of CFS groups throughout the country that they are not alone, and that they do have power. CFS groups are discovering that they have political power and that they can harness the power of the internet to further their agendas.

The paths that I would like see to see pursued are:

(1) Statewide CFS support/advocacy groups in each and every state

(2) Certification of statewide CFS support/advocacy groups to provide continuing medical education, continuing nursing education and healthcare professional education programs within their respective states

(3) Participation of statewide CFS support/advocacy groups in the curricula of the medical schools within their respective states

(4) A national medical student scholarship program or individual statewide programs to encourage and supplement medical student knowledge of CFS

(5) A national council of CFS support groups to work with both the U.S. House of Representatives and the U.S. Senate on national issues and legislation related to CFS, and

(6) The establishment of a joint House/Senate Caucus Committee to oversee the implementation of national legislation that furthers CFS research, healthcare provider education, and patient care.

The recent, September 17, 2007 CFS Research Funding Workshop sponsored by the NIH’s Office of Women’s Health and Research demonstrated clearly to the attendees that there is an understanding of CFS amongst many of the Institutes that compose NIH. Institute representatives enunciated a willingness to fund CFS research and acknowledged that CFS research is relevant to their respective Institute’s missions. In my opinion, this is remarkable progress.

To paraphrase from the lyrics of the Broadway show, “Gypsy,” while everything is not coming up roses for the CFS Community, it is our inning. The CFS world is spinning. We need to do to keep it spinning because this is just our beginning!

To Part I of Dr. Friedman’s Interview: The Federal Response to ME/CFS and the CFSAC
To Part II: Chronic Fatigue Syndrome (ME/CFS) Research: Roadblocks and Opportunities

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