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SOME PATIENTS WITH ME/CFS RESPOND TO TREATMENT FOR CHRONIC LYME DISEASE

Posted Oct 10 2011 4:57am
I have been wanting to update on the situation re XMRV but have been busy reading what has been unfolding which is so complex, I decided Ken Friedman's podcast gave a good summary but with so much more of interest.
Earlier post here about Ken.

(Partial/near complete?) Transcript of Ken Friedman's recent podcast on IACFS/ME conference
by XMRV Global Action on Sunday, 09 October 2011 at 18:43

[lp:Great thanks to Jane Clout for the transcription and for sharing it & to Tom Kindlon for posting it to co-cure.org]

[TK: Jane Clout took the time to prepare this (partial/near complete?)
transcript and posted it today on mecfsforums with permission to
repost. @XMRV_GA yesterday found an alternative link that may work in
all browsers for those who want to listenhttp://www.radio4all.net/index.php/program/54805 . I can't listen at
the moment so can't comment on accuracy . Tom (@TomKindlon) ]
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http://bit.ly/qZPapF i.e.
http://www.radio4all.net/files/dialogue@radio.fm/1763-1-disRKenFreedmanChronicFatigue59m52s.mp3

Dr Ken Freidman on the future for Chronic Fatigue Syndrome research
and treatment - thoughts from the IAME conference.

This recording doesn't play properly until 12:00, and even then there
are breaks in the recording until the second half. I'm transcribing
that section, because Ken has some important stuff to say there. I
just wish I could hear it all.

Having played it right through and gone back to the start, it seems to
be playing ok now. Loading problems.

Disrespect welcomes Dr Ken Friedman.


04:00 Ken: "In the United States there was just a very recent - I'm
going to use the term battle -with regard to the ICD 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 organisations 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 upon 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.

05:17 Interviewer: Asks question about difference between Neuro and
Somo disorders... Ken explains. Talks about prejudice against people
who work in the field, the difficulty in getting disability insurance
payments, and doctors under investigation for treating biomedically,
including Myhill, and one other whos name is not yet in the public
domain and is not given here either.

10:00 Talks about his SOK presentation 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

15.30 Music break

18:44 Interviewer: "Did the conference hold out hope for any of
these situations in its attempts to change the view of CF and of new
research?

Ken: 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, and 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 divising 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.

Interviewer: Care to share any of those?

Ken: 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

Interviewer: So it's a conservative definition

Ken: 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, and 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, (interviewer: really?) 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, and 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.

(i.e. suck it and see. This bit really worries me. jc)

One of the interesting papers that was presented at this meeting was
by a clinician, I believe he's at GW, 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. Its 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 anti-biotics that are used in the
treatment of Lyme disease, so that there is at least potential overlap
between Chronic Fatigue Syndrome and other illnesses, and this is
something that needs to be looked at much more carefully.

24:15 Interviewer: And you spoke of multiple causes too, or multiple origins?

Ken: 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.

Interviewer: And they have an immune system what? Inability?

Ken: Inability or defect to clear these infections from their body
and so they persist.

Interviewer: Yes, I think immune abnormalities have long been found in
Chronic Fatigue patients haven't they?

Ken: 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.

Interviewer: So then the job becomes defining the subsets?

Ken: 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.

27:20 Interviewer: 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?

Ken: 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

29:15 Interviewer: Yes, there are so many effects, and now you are
saying there are so many agents

Ken: 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. And 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.

30:00 Interviewer: What else came out of the conference that you took away?

Ken: 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 ate 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 upon that they are looking for proteins,
or protein differences, or differences in concentrations of proteins
between patients and normal controls. And so we are beginning to see
what the differences are between normal controls and patients with
Chronic Fatigue Syndrome. And 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
normalise the molecules that they are producing that are producing
their symptoms.

32:15 Interviewer: Wow! And that sounds quite in line with current
research too, it doesn't sound far afield

Ken: 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.


http://www.radio4all.net/files/dialogue@radio.fm/1763-1-disRKennethFreedmanChronicFatigue59m52s.mp3

Dr Kenneth Freidman on the future for Chronic Fatigue Syndrome
research and treatment - thoughts from the IAME conference.

music break until
36:25 Interviewer: Where's the leading edge of the research and the
treatment right now
Kenneth: I believe the leading edge of research and treatment will be
in two area. 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

Interviewer: Which is why you said that it's keeping up - in other
words, its in the mainstream of research to treat diseases

Kenneth: That's correct. At the meeting we had people, granted mostly
from the United States, 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's a fellow there from Spain, who presented a lovely paper in a
session there that I chaired, so I believe that it's all over the
world.

38:00 Interviewer: There's an initiative, the Chronic Fatigue
initiative, that's attracted prominent professionals that have been
treating Chronic Fatigue Syndrome some of them for as long as 20 - 25
years, can you tell us anything about that?

Kenneth: 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 upon
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 organisation that is coming out
of the gate, if you'll permit me to use that term, and that is called
Simmeron Research 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, and 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 twenty-five and thirty years. (int: 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 Simmeron 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 shaKenneth
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.

42:10 Interviewer: 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 - there was one rese...

Kenneth: 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, 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,

and that before the issue of XMRV is fully understood, that much more
research has to be done, 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, 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.

44:30 Interviewer: 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. (Kenneth: Correct.)So ambivalence
would not describe the researchers attitude at all.

Kenneth: No, I don't think there is ambivalence. It depends upon 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.

And there was one report there that XMRV is a contaminant that has
contaminated commercial products that are used in tissue culture. And
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.

45:50 Interviewer: OK, so the relationship of XMRV to chronic
fatigue is still unestablished

Kenneth: 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

Interviewer: What would you like to summarise your experience at the
conference with before we close?

Kenneth: I think it was a great conference. I think that the world
is paying more attention to Chronic Fatigue Syndrome. I think that
Chronic Fatigue Syndrome as demonstrated at this conference is there
is a huge amount of very promising data. There was a summary of the
conference provided by Tony Komaroff, which is a name for people that
have been following Chronic Fatigue Syndrome research will be familiar
with.

He's a well respected Chronic Fatigue Syndrome researcher and
commentator, and 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.

That 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 organisation 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

49:25 Interviewer: I appreciate that point of view, it's quite
compelling. Perhaps, only perhaps because I'm not personally
acquainted, I understand the attitude with 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

Kenneth: 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 Chronic Fatigue Syndrome because it 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".

51:22 Interviewer: And they were centers for research, for
promoting research?

Kenneth 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 coming back

Interviewer: Well I understand we established a new center in BC in
British Colombia in Canada for chronic fatigue, but I don't know..

Kenneth: 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?" (int: 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

Interviewer: I hope you're right! I appreciate all the time you've
spent with me, it's been a very thorough interview.

Kenneth: 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.

Interviewer: And again, I thank you for your time.

Kenneth: You're quite welcome.

Permission to repost both parts granted.

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