"We all left the conference knowing that CFS is still a puzzle, and that we do not have all the answers or know all the pieces of the puzzle, but we are devising methods of working with the pieces of the puzzle." - Ken Friedman, PhD
In a radio interview following the Sep 22-25 IACFS/ME conference, long-time CFS advocate Ken Friedman, PhD, shared some encouraging take-away points on “The Future for Chronic Fatigue Syndrome Research and Treatment.” An audio podcast is offered here.
And the following is a condensed summary/transcript of Dr. Friedman’s encouraging interview - kindly prepared and shared by MECFSforums.com member Jane Clout, with permission to repost:
Dr. Ken Friedman:
"In the United States there was just a very recent - I'm going to use the term battle - with regard to the ICD [International Classification of Diseases] because the US government was going to place Chronic Fatigue Syndrome as a somatoform disorder as opposed to maintaining it as a neurological disorder.
So a group of organizations banded together and wrote a long, very scientific argument as to why Chronic Fatigue Syndrome should not be considered a somatoform disorder but rather a neurological disorder, and went to essentially an appeal hearing in Baltimore, Maryland on September 14th and presented their argument, their document.
And what we were told is that - based on the strength of that document, and the scientific arguments - that in fact Chronic Fatigue Syndrome would be retained as a neurological disorder and not moved into a somatoform disorder.
So we are very pleased with that but we certainly want to maintain that from this point going forward.
Asks question about difference between neurological and somatoform disorders...
Talks about prejudice against people who work in the field, the difficulty in getting disability insurance payments, and doctors under investigation for treating ME/CFS biomedically - including Dr. Sarah Myhill, MD, in the UK, and one other whose name is not yet in the public domain and is not given here either.
Talks about his SOK presentation [at the NIH CFS State of Knowledge Workshop] April 6th this year, and the prejudice against researchers and patients and doctors. "The underlying thing (belief) is that if you don't have a test for it, then it doesn't exist."
Goes on to talk about sectioned patients in England and forcibly removed children in the US.
"Did the conference hold out hope for any of these situations in its attempts to change the view of CF and of new research?”
“I think there is - um - I think we all, both patients and researchers and healthcare providers, left the conference with a much more positive attitude. I think that because we all left knowing that it is still a puzzle, and that we do not have all the answers or know all the pieces of the puzzle, but that we are devising a method or methods of working with the pieces of the puzzle.
“For example, there are now at least four different definitions of Chronic Fatigue Syndrome, and we think we have:
• A pretty good research definition of Chronic Fatigue Syndrome,
• And a pretty good definition for diagnosing and treating Chronic Fatigue Syndrome.”
“Care to share any of those?”
“Well, the research definition that seems to be used is something called the Fukuda case definition, Fukuda et al., which dates back to 1994, and that definition has been used since that date forward.
“It is much more restrictive a case definition than one would like to see used on patients, but it helps to define a patient population that is relatively suffering from similar symptoms and so therefore for research purposes you are apt to get results that are clearly defined.”
“So it's a conservative definition.”
“A conservative definition that may exclude some patients and therefore is not workable in a clinical situation. In the clinical situation, you want something that is more relaxed, or a more inclusive definition, and there are actually a couple of those.
“There's what's called the Canadian Case Definition, which was developed in 2003, 2004, and that seems to be very good at identifying patients and their key symptoms, and having them diagnosed as having Chronic Fatigue Syndrome.
“And then there is a brand new one that has been developed in 2011 that is called the International Case Definition. That one is essentially too new for anyone to have any sense of how it will fare, as either a patient case definition or as a research case definition.
“But what seems to have happened at this meeting is that there seems to be agreement that we will collect data or get information from each patient that will permit us to diagnose patients using several of these case definitions."
“So that the information will not be lost, and so that we will then in retrospect be able to see which case definition works best, both in the clinical situation and in the research situation. That's a much more intelligent approach than trying to squeeze all patients into one case definition and, obviously, excluding some patients from treatment because they don't fit this particular case definition.
“One of the interesting papers that was presented at this meeting was by a clinician, I believe he's at GW [George Washington U?], near Washington DC, was sort of a courageous thing. What he did was, he took his Chronic Fatigue Syndrome patients, and he treated them for Lyme disease, and approximately a third of them improved, their physical condition improved when treated for Lyme disease.
“It’s not sure exactly what that means. We're not sure whether that means that:
• Approximately one third of the patients in his patient population had Lyme disease, and were just missed with the Lyme disease diagnosis, but when they were treated for Lyme disease actually improved,
• Or whether the actual, or their particular kind of Chronic Fatigue Syndrome, is susceptible to the same sort of treatment with antibiotics that are used in the treatment of Lyme disease, so that there is at least potential overlap between Chronic Fatigue Syndrome and other illnesses.”
“This is something that needs to be looked at much more carefully.”
“And you spoke of multiple causes too, or multiple origins?”
“Yes, I do believe that there are multiple origins, and I believe that the majority of clinicians and researchers at this meeting were coming to this point of view.
“Because there are a number of infectious agents that have been found to be initiators of the illness cycle in patients. One of the names, former names of Chronic Fatigue Syndrome was chronic Epstein Barr Virus, and now there is work to show that patients that get sick with other viruses also develop Chronic Fatigue Syndrome. HHV6 for example, and enterovirus.
“If patients do not recover from these viral infections they can develop Chronic Fatigue Syndrome. So it would appear that Chronic Fatigue Syndrome is essentially the body's response, or perhaps the body's immunological response, to an infection that isn't cleared from the body.
“Which might argue that the people in whom this occurs have immune systems that are unable to clear these infections and therefore Chronic Fatigue Syndrome represents an immune system abnormality or defect because these patients lack the ability to clear these infections from their body.”
“And they have an immune system what? Inability?”
“Inability or defect to clear these infections from their body and so they persist.”
“Yes, I think immune abnormalities have long been found in Chronic Fatigue patients, haven't they?”
“Immune abnormalities have been found. The problem is that there isn't one consistent finding. And perhaps the reason for that is that there are these sub-categories of Chronic Fatigue Syndrome patients, and that if we define the right subcategory of Chronic Fatigue Syndrome patients then we may be able to find a clear, uniform, distinct pattern of immunological abnormalities in a subset - in this particular subset of Chronic Fatigue Syndrome patients.”
“So then the job becomes defining the subsets?”
“Absolutely. And researchers are beginning to turn their attention to that, and some of the questionnaires that are being developed to screen Chronic Fatigue Syndrome patients are beginning to ask questions that will assist us in being able to differentiate the subgroups and perhaps the infective agents that are precipitating Chronic Fatigue Syndrome in these patients.”
“So this is a hypothetical, broad immune response to neurological agents of possibly many origins with a common human adaptation to it which involves fatigue and neurological abnormalities and consequences - am I correct? Is this what's hypothesized?
“Well, the agents are believed to be infective, and they don't necessarily have to be neurological, although some of them may be.
“There is another theory that's beginning to go around now, and that is that if infectious agents are not cleared from the body they can establish themselves in one or more of what's termed the body systems - for example the gastrointestinal tract or the central nervous system, or in the cardiovascular system.
“So that we are now beginning to see at least the suggestion that things like cardiovascular disease or hardening of the arteries or the deposition of plaque in the arteries is not only caused by the deposition of cholesterol, but might also be the reaction to some bacteriological agent that has been deposited in the blood vessels, and therefore the plaque is an attempt to cover up or seal off those kinds of infections.”
“And so Chronic Fatigue Syndrome in an analogous manner may be a reaction that is akin to that kind of mechanism.”
“Yes, there are so many effects, and now you are saying there are so many agents.”
“Well, the idea is to tease them out. I'm pretty exited by it because I think what we are beginning to see is a whole new area opening up to us about how infection invades the body and the consequences of it.
“So that what we discover about chronic, what I would call hidden infections in the body, will be applicable to a whole variety of diseases and answer a lot of questions that have been around for a long time but have never been answered before.
“And this will give us a tool, a mechanism of possibly providing answers to these questions.”
“What else came out of the conference that you took away?”
“What I took away from the conference is:
• First of all the willingness to work with multiple questions that lead to the possibility of diagnosing patients by multiple case definitions.
• “I think there is a renewed excitement in the involvement of the brain in Chronic Fatigue Syndrome, because there is more evidence of different kinds.
• “I think there is also a lot more work in the area of genetics and Chronic Fatigue Syndrome. People are looking at genes being
turned on, being turned off in what I call the subsets, or some subsets, of Chronic Fatigue Syndrome versus "normal subjects."
“They are being able to find differences, or particular genes being turned on and turned off. And based on that, they are looking for proteins, or protein differences, or differences in concentrations of proteins between patients and normal controls. So we are beginning to see what the differences are between normal controls and patients with Chronic Fatigue Syndrome.
“This is all very exciting because eventually we will be able to understand the differences between normal healthy people and Chronic Fatigue Syndrome patients by understanding the difference in the molecules that they are producing.
“And once we do that, we should be able to alter, or change back, or normalize the molecules that they are producing that are producing their symptoms.”
“Wow! And that sounds quite in line with current research too, it doesn't sound far afield.”
“No, it's not far afield, and what it means is that there is new excitement, and that the field of Chronic Fatigue Syndrome is keeping up with the more advanced technologies and people are beginning to apply those technologies to the field of Chronic Fatigue Syndrome.
“Not only are they beginning to apply it to the field, but they are also obtaining results, significant results that will eventually lead to better treatments.”
Music break until
“Where's the leading edge of the research and the treatment right now?”
“I believe the leading edge of research and treatment will be in two areas:
• One will be in the neurological, in the involvement of the brain,
• And the other will be in the genetics and the proteins, or what's called the proteanomics of Chronic Fatigue Syndrome.
“Those to me at this point seem to be the two most promising areas. And again, those are the areas that are keeping up with the most sophisticated of treating all diseases, and trying to make gains in all diseases.”
“Which is why you said that it's keeping up - in other words, it’s in the mainstream of research to treat diseases.”
“That's correct. At the meeting we had people, granted mostly from the United States, but some from Canada, some from Norway, Japan, Australia, New Zealand; there was one fellow there from France. I'm afraid I'm going to leave someone out and I may be chided for it, but essentially the research is coming in from all over the world.
“There was a fellow there from Spain, who presented a lovely paper in a session that I chaired, so I believe that it's all over the world.”
“There's an initiative, the Chronic Fatigue Initiative [http://cfinitiative.org], that's attracted prominent professionals that have been treating Chronic Fatigue Syndrome - some of them for as long as 20 to 25 years. Can you tell us anything about that?”
“Well the Chronic Fatigue Initiative is relatively new, and I don't think that they are at the point where they are actually expending grants.
“The board of the IACFS/ME did meet with the folks that run the initiative, and what we were told is that they wish to stimulate Chronic Fatigue Syndrome research, and they are at the point where they are gathering information to essentially determine the status of Chronic Fatigue Syndrome research, and what they will be doing is formulating a series of questions which they believe will most quickly and expeditiously provide initial research results that will stimulate other research that will provide treatment and get at the cause of Chronic Fatigue Syndrome.
“Once they have formulated those questions, they will put out a request for proposals to address those particular questions about Chronic Fatigue Syndrome.
“It's going to be a very targeted program based on what they feel will be the most productive research challenges that need to be addressed in order to quickly get to treatment and potential cures of Chronic Fatigue Syndrome.
“And I should add that there is another organization that is coming out of the gate, if you'll permit me to use that term. That is called Simmaron Research [http://simmaronresearch.org], which is headed up by a group of people who are of a similar mind, namely to promote research into Chronic Fatigue Syndrome that will yield results in a short time-frame. The director of this program is a well-known internist by the name of Dan Peterson.
“Dan has been working with Chronic Fatigue Syndrome patients for I guess somewhere between 25 and 30 years.
“He's in Nevada, isn't he?”
“Yes, yes, Incline Village. So he has been I guess the resource that is responsible for the formation of Simmaron and again, this is another venue for stimulating research.
“And of course we also have the Whittemore Peterson Institute where Annette Whittemore, also with the assistance of Dan Peterson, have established a research institute, and they certainly have shaken up the field of Chronic Fatigue Syndrome and stimulated a lot of research about Chronic Fatigue Syndrome with their initial finding of XMRV in a large percentage of a defined patient population with Chronic Fatigue Syndrome.
“These are new players, I would call them, to the field of Chronic Fatigue Syndrome that will bring an element of excitement, and hopefully will accelerate Chronic Fatigue Syndrome research:
• Not only by virtue of their own investments into Chronic Fatigue Syndrome research,
• But also by stimulating the Federal Government to pay attention and to also put in more funds to Chronic Fatigue Syndrome in order to balance out these private research efforts.”
“You hear that? Federal Governments everywhere, pay attention!
“You mentioned XMRV too, and I think that was dealt with ambivalently at the conference, wasn't it?"
“Oh, I would not characterize it as ambivalence, I would say that there are a number of findings that put the initial 2009 Science paper into doubt. The Whittemore Peterson Institute and, I would characterize her as the lead researcher, Judy Mikovits [who separated from the WPI on Oct 2], still maintain:
• That there are many questions generated by their initial finding that have not been addressed by the papers that have come out subsequently, that tend to characterize their initial findings as being negative.
• That before the issue of XMRV is fully understood, much more research has to be done,
• And that the WPI is continuing to do research on XMRV, and so are many other laboratories, in an attempt to understand what is the relationship of XMRV to Chronic Fatigue Syndrome.”
“And now, if the results presented at this particular conference are to be believed, what is the relationship of XMRV to a lot of cells in culture, and possibly even to a lot of vaccines that are currently being used throughout the United States and throughout the world?
“The situation is far from resolved. It begs to be resolved. And hopefully it will be resolved.”
“So what I describe as ambivalence, is described by people like Judy Mikovits as a need to resolve unresolved implications that the research has uncovered.”
“So ambivalence would not describe the researchers’ attitude at all.”
“No, I don't think there is ambivalence. It depends on how you wish to view Judy's data.
• If you look at it one way, it pertains to Chronic Fatigue Syndrome,
• If you look at it another way it has consequences throughout the world, and throughout laboratories who do tissue cultures throughout the world.
“There was one report there that XMRV is a contaminant that has contaminated commercial products that are used in tissue culture. If that's the case - if that proves to be the case - then the implication is of tremendous impact and of tremendous consequence to tissue culture and all the research that is done using tissue culture. And if that is the case then Judy Mikovits needs to be applauded for what she has done in terms of uncovering this contamination, which is far beyond anyone's initial expectation.”
“OK, so the relationship of XMRV to chronic fatigue is still unestablished.”
“The relationship to Chronic Fatigue Syndrome is still unestablished, and the initial - I would go as far as to say the initial hypothesis - has been called into question, but it remains unresolved.”
“What would you like to summarize your experience at the conference with before we close?”
“I think it was a great conference.
“I think that the world is paying more attention to Chronic Fatigue Syndrome.
“I think that as demonstrated at this conference is there is a huge amount of very promising data [regarding] Chronic Fatigue Syndrome.
“There was a summary of the conference provided by Tony Komaroff, MD , which is a name people who have been following Chronic Fatigue Syndrome research will be familiar with.
“He's a well respected Chronic Fatigue Syndrome researcher and commentator. He provided the overall summary, and at the end of it he was asked ‘Which of these projects do you think deserves the most attention?’ And his statement in response was that ‘They all do. They are all exceedingly promising results,’ and I agree with that.
“The only thing I would add is that these are all exceedingly promising results done on relatively few patients with relatively or comparatively relative small budgets - and that there needs to be an infusion of much more money into these studies, now that their promise has been shown.
“I think that as we have now all learned - based on the jumping in of these few new benefactors to Chronic Fatigue Syndrome - is that we cannot rely solely on federal governments to support Chronic Fatigue Syndrome.
“We need benefactors but benefactors are few and far between, and so I believe that the patient population, or patient populations throughout the world, really do need to get more involved and support these kinds of research.
“And now with the advent of what is termed social media, people are getting on social media and saying ‘Tomorrow is my xx birthday, and instead of sending me gifts because I am a patient, send money to this or that research institute or send money to this organization to fund clinical care services.’
“And that, I think, is the only way that we will be able to achieve the magnitude of funding that we will need to be able to make Chronic Fatigue Syndrome understood in terms of pathophysiology, to make it treatable, with definitive treatments in a time frame that will benefit the patients who have it now.”
“I appreciate that point of view, it's quite compelling. Perhaps, only perhaps because I'm not personally acquainted, I understand the attitude within our federal government is that we are not going to be able to meet our need for skilled workers in the near future by immigration alone; that we need to expand the number of people who work past retirement, and that in that light they might be willing to look at something like chronic fatigue as limiting a great number of the population who could contribute to the workforce and the tax base in the future.
“Well it would be wonderful if any federal government would be willing to put more money into Chronic Fatigue Syndrome.
“I think that in most countries it's the patients who have to advocate for greater federal funding. Not only do we need to keep older researchers working in Chronic Fatigue Syndrome, but we need to somehow stimulate new researchers into the field of Chronic Fatigue Syndrome - which raises the whole issue of how do you do that?
“Unfortunately, because Chronic Fatigue Syndrome is an underfunded area of research, most young researchers when looking for a career in research are not going to go there. They are going to go to the better funded areas because that is where they see that they can earn a living.
I think that we need to address the concern that Chronic Fatigue Syndrome is a viable area of research by demonstrating that there is funding for it and consistent funding for it. In the United States several years ago we had five centers of excellence, and then precipitously the government said ‘We're not doing this any more.’”
"And they were centers for research, for promoting research?"
“These were centers for research, for research and clinical care, spread throughout the United States, and the federal government, the National Institute of Health who funded it, decided they were not going to do it anymore, and so the centers closed.
“The people who did the research in the centers, who were senior researchers, junior researchers, laboratory research associates, and technicians, were then without funds, were without salary, so what were they to do? They were forced to go into other areas, and I suspect that if one ever did this study. they were loath to come back.”
“Well I understand we established a new center in British Colombia in Canada for chronic fatigue, but I don't know.”
“Yes, and when it was done, I clipped the announcement of it that I received, and I sent it to the Center for Disease Control and I said ‘If British Colombia can do this, why can't we?’”
“Yes, exactly, exactly.”
“So I applaud the province of British Colombia, and I hope that other provinces can do the same. And I hope that the Canadian experience will embarrass governments in other countries to do the same.”
“I hope you're right! I appreciate all the time you've
spent with me, it's been a very thorough interview.”
“Well I hope that I have been able to both illuminate, and also to provide hope and to provide inspiration and to provoke enthusiasm of the Chronic Fatigue Syndrome community that you serve, in Chronic Fatigue Syndrome research and patient care,
“And to please not give up on us - the educators, the researchers, the clinicians - because we really are trying our best to meet the needs and advance the field of Chronic Fatigue Syndrome.”
Permission to repost granted by transcriptionist Jane Clout. Thank you, Jane!