Saturday, March 21, 2009

ME/CFS Conference in London, May 28-29

Reference:
*4th IiME International ME/CFS Conference 2009*
Help ME Circle, 17 March 2009 - see Co-Cure:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0903c&L=co-cure&T=0&F=&S=&X=4F24C95156873EEEE0&Y=j.van.roijen%40chello.nl&P=2092


~jvr


``````



The International ME/CFS
Conference 2009 News



Management, Treatments and the Latest
Advances in Research into ME/CFS



The international ME/CFS Conference on 29th May
promises to be the best attended so far.

With twenty places reserved for medical students as
part of the Invest in ME Biomedical Research Fund
and bookings up on this time last year early booking
is advisable.


The conference has shown the increasing interest in
hearing the latest biomedical research and
treatments for ME.


Already thirteen countries are represented at the
conference and the opportunities for networking
amongst healthcare professionals and patient groups
are unequalled.


The conference will be showing new research such as
that on cytokines from the Whittemore-Peterson
Institute where Dr Judy Mikovits and her colleagues
have developed a diagnostic blood test which
measures cytokines and chemokines that can be
used to confirm a diagnosis of ME.


Other research is confirming the data from the IiME
2008 conference - Sub Grouping and Treatments of
ME - with research projects demonstrating the fact
that sub-typing patients and treating them
accordingly can greatly reduce symptoms and give
people their lives back.


In Norway there has been recent publicity of
bedbound patients being investigated and
subsequently treated by Professor Kenny De
Meirleir. Professor De Meirleir's investigations are
uncovering various reasons for these patients'
illness and some patients are already reporting
remarkable improvement in their condition.
Professor De Meirleir will be presenting his
research and results at the conference.


The complications of long standing ME is poorly
understood and rarely discussed or even researched.
An epidemiological study of this nature is something
which needs to be performed and, again, we look to
the WPI for leadership here. We know that Annette
Whittemore is asking the questions such as how
many patients experience neurological problems such
as seizures, or develop MS, heart disease,
gastrointestional disease, osteoporosis, and/or
cancer?

Along with the WPI we feel that it is time to
increase awareness of these patients' level of
disability and suffering to challenge those who
characterise ME as benign.

Many thanks to those individuals and groups who are
helping us spread word of the conference to
healthcare professionals. The Sponsor a GP scheme
is still available for healthcare staff and local ME
groups to work together.


Since the last newsletter we have added an
a4-poster as well as our conference flyer - both
available here:
http://www.investinme.org/IiME%20International%20ME%20Conference%202008%20-%20Review%20Home.htm



Conference News - Professor Basant Puri

We are pleased to add Professor Basant Puri to our
line-up for the conference. Professor Puri was a
speaker at our first ever international conference and
was on our intended list of speakers early on. We
are glad that he is able to present for the first time
details of his latest research at the conference.


Our agenda for the International ME/CFS
Conference on 29th May 2009 is now
available.



Presenter      -          Presentation
---------------------------------------------
Registration & Media interviews
---------------------------------------------
IiME        -  Welcome to the Conference
---------------------------------------------
Professor
Jonathan Brostoff
MA DM DSc(Med)
FRCP FRCPath FIBiol - Conference Chairman
---------------------------------------------
Mrs Annette
Whittemore   -           Key Note Speech
---------------------------------------------
Professor
Garth Nicolson PhD - Similar Infections
`````````````````````Found in ME/CFS and
`````````````````````Neurodegenerative and
`````````````````````Neurobehavioral Diseases
---------------------------------------------
Professor
Harald Nyland
MD, PhD    -          Epidemics & ME:
`````````````````Lessons from the
`````````````````Giardia epidemic
`````````````````in Norway
---------------------------------------------

Break

---------------------------------------------

Dr. Jonathan
Kerr MD, PhD   -      Severely-affected
```````````````````Sub Groups of ME/CFS
---------------------------------------------
Dr. Barbara
Baumgarten MD  - Services for correct
`````````````````diagnosis and Management/
`````````````````Treatment of ME
---------------------------------------------
Discussion        -    The ME Clinic

---------------------------------------------

Break

---------------------------------------------

Professor Kenny
de Meirleir MD, PhD  - Case Studies of Diagnosis
`````````````````````and Treatments for ME/CFS
---------------------------------------------
Dr. Dan Peterson MD - Treatment Regimes for the
``````````````````````Most Severe Cases

---------------------------------------------

Break

---------------------------------------------

Dr John Chia MD  -   Diagnosis and Treatment of
````````````````````chronic enterovirus infection
````````````````````associated with ME/CFS
---------------------------------------------
Dr. Judy Mikovits PhD - Research and Diagnosis
``````````````````````of difficult and complex
``````````````````````medical cases of ME
---------------------------------------------
Dr. Judy
Mikovits PhD        -   Research and Diagnosis of
````````````````````difficult and complex medical
````````````````````cases of ME
---------------------------------------------

Neuro-Imaging
of ME Patients     -    Professor Basant Puri
---------------------------------------------
Professor Jonathan
Brostoff  + Presenters   - Plenary Session
---------------------------------------------

Adjourn


``````


Hillary Johnson Pre-conference
Presentation Dinner - 28th May

We would like to remind everyone of the
pre-conference presentation on 28th May with Hillary
Johnson, author of Osler's Web: Inside the Labyrinth
of the Chronic Fatigue Syndrome Epidemic - see
here:
http://www.investinme.org/IIME%20Newsletter%20Oct%2008.htm#ME_Book_-_Oslers_Web
There are still some tickets available for this event.


The evening will begin with Hillary discussing the
role of the US Centre for Disease Control (CDC)
and how its influence has affected the way
ME/CFS has been perceived, not just in America
but around the world.
Hillary will also have copies Osler's Web with her and
all of the conference presenters are invited - please
see here for details:
http://www.investinme.org/IiME%20Conference%202009/IIME%202009%20International%20ME%20Conference%20News%2001.htm


Dr Byron Hyde once said at one of our previous
conferences that, if he were asked what he
needed for resolving the problem of ME that he
would include a lawyer and a historian. For those
interested in the history behind the current
situation with ME and why there is so much
politicisation around ME and why lives continue to
be lost to this illness today then this presentation
is a unique opportunity to learn from somebody
who has been through all of the politics since the
Incline epidemic in the eighties.



``````````


Conference DVDs

As in previous years IiME cannot promise we will
deliver a DVD of this conference. Our objective is to
provide a platform for the most relevant research and
experience of ME/CFS and we have to use our limited
funds to ensure the conference goes ahead before
we can commit to funding a DVD.

We'll do our best. Meanwhile, we should mention
that the presentations which were given at the 2008,
2007 and 2006 conferences are still relevant and
available in full on the DVDs (click here for details:
http://www.investinme.org/InfoCentre%20Education%20Homepage.htm

``````



Accountability....Again


We have invited the Secretary of State for Health
and his sub-ministers, the head of the Medical
Research Council and the Chief Medical Officer all
to attend the IiME conference. All have declined.


In June 2008 the IiME newsletter (see here:
http://www.investinme.org/IIME%20Newsletter%20June%2008.htm
documented the lack of accountability exhibited by
those officials entrusted with the healthcare of
people with ME and their families.

We are disappointed that these public servants have
again declined to attend the premiere conference on
ME in Europe. However, it is not because of these
refusals alone by these individuals to have their
respective organisations and departments
represented at the conference which makes us
disappointed. It is the continued indifference and
lack of accountability being shown by the
government, the CMO and the MRC to the plight of
people with ME and their families.

Whilst it is possible to have doctors, patients and
carers travelling to the Invest in ME conference from
all over Europe and as far afield as Australia, New
Zealand and North America, it seems impossible to
get the CMO, the Minister for Health or anyone from
the MRC - despite some of them only having a 200
metre walk to the conference venue in Westminster.


We invite everyone to write to the respective
departments and ministers to state their views as
to why they should be at the conference, to listen
to the latest biomedical research on ME.




      --------------------------------------------
      "I represent the Government, for which I
      work, the medical profession, which I try
      to listen to, and the public. My moral
      principle is that if ever there is a conflict it
      is the public who wins."

      - Sir Liam Donaldson Chief Medical
      Officer

      from About the Chief Medical Officer
      --------------------------------------------



``````


Petition

Dave Loomes has made this even easier. Dave has
set up a petition calling for these public servants to
be present at the conference in May.


The petition reads -


      --------------------------------------------
      We the undersigned petition the Prime to
      send the Minister Of Health, Medical
      Research Council delegates and the Chief
      Medical Officer to attend the INVEST in
      ME Conference 29th May 2009 London.

      The previous IiME conferences in 2008
      attended by presenters and delegates
      from 13 countries, from Europe, USA,
      Australia, New Zealand and South Korea
      demonstrated that "PROVEN
      BIOLOGICAL MARKERS & TREATMENTS
      FOR SOME SUB TYPES OF ME/CFS ARE
      ALREADY THERE!"
      --------------------------------------------



See the petition here:
http://petitions.number10.gov.uk/AttendIiME2009/#detail


The petition has already reached 1000 signatures so,
if you are a UK citizen, please add your name to
support us.

Dave's idea has also generated another idea -


````````````


Lost Voices -International
ME Awareness Month 2009


Our conference is intended to help focus more
attention on the severely affected people with ME.

What better way to raise awareness during ME
Awareness Month than by highlighting the plight and
saluting the resilience of these Lost Voices. To
accompany the book we intend to use the title of the
book to herald ME Awareness Month with an appeal
to hear the people who are often neglected - from
healthcare, from research trials and from society.


Lost Voices - International ME Awareness
Month 2009


Dave Loome's petition has generated the idea of
raising more petitions during ME Awareness Month
regarding ME. The idea is sound.

Many aren't able to attend events and signing a
multitude of responsible petitions relating to ME will
provide a way of changing views and demonstrate
the need for action by those officials who do nothing.

Another idea is to sponsor a Lost Voices book during
ME Awareness Month and having it delivered to GPs,
healthcare staff or educational or government staff,
with a message - see here:
http://www.investinme.org/IiME%20Conference%202009/IiME%202009%20International%20ME%20Conference%20Sponsor-a-GP.htm



Any further ideas please send to us.


````````


Lost Voices - The Book


The book has now been distributed to fifteen
countries with some taking many orders and sharing
the cost of distributing them to others. The book is
being sold on a not-for-ptofit basis so that as many
as possible can make use of this valuable aid to
educate people about ME.

We are pleased that three libraries and two PCTs
have also ordered Lost Voices. If you belong to a
support group please suggest that it is added to your
group's library.


Medical libraries

We have always believed that better education is
the key to improving the situation and the hopes for
the future for people with ME.

One of the voices in the book, Stacey, has
pre-empted our plan to make the book more widely
available to the medical libraries around the country.
Stacey has contacted many people and raised
enough money to enable Invest in ME to donate a
copy of Lost Voices to all medical libraries in the UK.
Stacey is continuing with her fundraising to help us
send copies to all teaching hospitals as well.


We hope this will directly help and influence
healthcare staff.






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Puppets, Puppeteers, Politicians and Racketeers

PUPPETS, PUPPETEERS, POLITICIANS AND RACKETEERS
 
Gurli Bagnall
 
The Judicial Review decision has been published and once again ME victims have been left on the sharp end of the stick. The anger expressed says it is not over, but before regrouping there are the tears of frustration and disappointment to be dealt with. It has been said many times and in many ways that justice is there for those who can afford it. I for one, need no convincing.
 
I recently watched whistleblower, Michael Moore's, documentary "Sicko" concerning the US health system. Reactions on the internet range from the convinced and outraged, to those who laughed at the pain and horror of it as if it were the funniest comedy to have hit the screens in the past decade or so.
 
The only criticism I have is that, in comparing the US health system with those of other western democracies, Moore tended to see only the good in the latter. However, in general terms, and overlooking preventable medical error and iatrogenic consequences, one could not argue if the discussion had revolved around well-known, routine illnesses only; but it didn't. It also covered the plight of those suffering the aftermath of fire fighting at the World Trade Centre in New York, so one might logically have expected comments to have been made about how similar conditions - such as GWS and ME - are dealt with elsewhere.
 
Aside from that, the documentary encapsulated many of today's problems and in particular, those within the two most powerful nations on earth - the United States of America and the United Kingdom.
 
The 15 March, 2009, issue of the New York Times, published a very good example of what is and has been happening in our major western democracies, and while this particular incident may have been bigger and grander in the States, the same thing happens in one form or another elsewhere. I refer to: A.I.G. Planning Huge Bonuses After $170 Billion Bailout.
 
FIRST PARAGRAPH: The American International Group which has received more than $170 billion in taxpayer bailout money from the Treasury and Federal Reserve, plans to pay about $165 million in bonuses by Sunday to executives in the same business unit that brought the company to the brink of collapse last year.
 
We might well wonder how those responsible for the certain collapse were entitled to bonuses in the first place. And where were the rules and provisos that must surely have gone with a handout of this magnitude? Why was an independent administrator not appointed to allocate this public funding? The questions are endless and the outrage is blistering but it is met with a "So what?" shrug of the shoulders. As they count out neat wads for themselves, the firm's lawyers say there is nothing they can do; they are apparently "contractually obligated" to pay the bonuses. Greed or criminal theft - describe the actions in any words you like, they are as water off a duck's back.
 
Be it in the US, the UK or New Zealand, big business has not been slow to trample on those who are already struggling to get up. What sort of human beings lobby for policies that create mass unemployment and then demand that benefits be cut down at best and stopped at worst? "Do that, and those layabouts will soon get back to work!" they proclaim while ignoring the fact that the climate they created means there IS no work. "He's disabled?" some ask with a sneer. "Rubbish! He doesn't HAVE to be a gym instructor! He only needs one leg to be a street sweeper!"
 
And now, without so much as a blush of shame, big business has become the biggest bludger of all time! It stood in line with hands outstretched to become the recipient of what must surely be the largest welfare payout ever. Even so, it continues to wield the big stick that says, "We'll do as we damn well please and you WILL foot the bill."
 
Since bonuses are generally meant as a reward for excellence over and above the usual salaries, we might consider that in today's typical family, both parents work to keep food on the table and a roof over the heads of their children. Some of these bonuses to which they are compelled to contribute through taxes, represent amounts which exceed the family's combined annual income.
 
The very people who would prosecute this family and strip them of all possessions if they did not pay their taxes, feel free to help themselves to the fruits of their labour - to wallow in it like pigs in muck. This is a "protection" racket like none other. The ideals of democracy have been trampled into the mire.
 
Tony Benn, retired British politician, commented on choices in an interview during the making of Sicko:
 
"Choice depends on freedom but if you are shackled by debt, you don't have the freedom to choose.
 
"I think there are two ways to keep people controlled. First, frighten the people and second, demoralize them. An educated, healthy and confident nation is harder to control."
 
He commented further that 1% of the world's population owns 80% of the world's wealth; people put up with it because of the fear engendered by the helplessness of personal circumstances. The question is, does that 1% also contribute 80% or more of taxes gathered? It is doubtful. If anyone knows how to evade and avoid paying taxes, it is they.
 
Just as the young family previously mentioned, needs no explanations about the fear of which Benn speaks, so ME victims need no explanations about lack of choices, eroding of confidence and the over-riding fear of how they are going to cope with the coming day.
 
"Will I be strong enough to take a shower?" "Am I going to be able to prepare a meal?" "How will I get the laundry done?" "Have I enough money to pay the electricity bill. or should I pay the rent this week instead?"
 
Are these the "benefits" of being sick to which chief puppet, Simon Wessely, refers as he jerks about on the end of his strings?
 
Is this what previous generations fought for? Is this what we pay our elected representatives in parliament and congress for? Who laid the foundations? Who gave the stamp of approval for the rich to rob those who do not have the means with which to protect themselves?
 
The world certainly had its share of problems before George W. Bush took over the Oval Office, but the day he triumphantly moved into the White House under very dubious circumstances, was the day the writing on the wall sent an unmistakable message to the rest of the world which, in one way or another, has been sorely affected.
 
Of particular interest to anyone with health issues, is that there are four times as many health care lobbyists as there are members of Congress ( http://www.opensecrets.org ). That goes a long way to explaining why the costs of medicines are outside the reach of many US citizens.
 
On leaving office, George W. Bush must have felt proud to have played his part in reducing the WHO rating of the US health system to number 37 - after France (1st), Italy (2nd), Singapore (6th), Japan (10th), United Kingdom (18th). He must also feel proud that (for example):
 
(From the documentary, SiCKO): A baby born in El Salvador has a better chance of surviving than a baby born in Detroit.
 
According to the United Nations Statistics Division, Population and Vital Statistics Report, the rate of infant deaths per thousand in El Salvador is 10.5. "Table 3, Live births, deaths, and infant deaths, latest available year, June 15, 2007.
 
 
According to the Michigan Department of Community Health, the rate of infant deaths for Detroit is 15.9 per thousand." Number of Infant Deaths, Live Births and Infant Death Rates for Selected Cities of Residence, 2005 and 2001 - 2005 Average," Michigan Department of Community Health Web Site,
 
 
More telling facts and figures can be found on: http://www.michaelmoore.com/sicko/checkup/
 
The last decades represent an era of corruption in the major western democracies such as the world has never seen before.
 
We are now hearing what many have long suspected - Bush, Cheney and Rumsfeld approved a policy of torture and humiliation in dealing with prisoners of war. The Geneva Convention, it seemed, was for other nations to obey while the United States did exactly as its president and his supporters pleased. They pursued their policy with an educated refinement that put Idi Amin and Sadam Hussein in the beginners' class.
 
This is not about despots and dictatorships in third world nations. Nor is it about the mafia with its associated murder and mayhem. This is about the two most powerful and wealthy nations on earth. It is about the sick person who the authorities threw from a hospital bed into the streets; it is about innocent people incarcerated in jails and mental institutions because that was convenient for someone with the power to do it. It is about children who are denied proper care and nutrition because drugs are a far more lucrative way of disciplining and controlling the symptoms of malnutrition.
 
The move to impeach both George W. Bush and Tony Blair for crimes against their countries and humanity says it all.
 
Even as tortured prisoners screamed, certain members of Congress made private fortunes from the sales of arms and pharmaceuticals. In Britain, Tony Blair gave his support and approval for these and more crimes.
 
The BBC News on the 27 August, 2004, ran the headline: "Blair impeachment campaign starts". At that stage he was being charged with:
 
*Misleading Parliament and the country over Iraq.
 
*Negligence and incompetence over weapons of mass desruction.
 
*Undermining the constitution.
 
*Entering into a secret agreement with US president.
 
See also:
 
Ten Reasons Congress Must Investigate Bush Administration Crimes.
 
 
Bush may have gone, his term completed, but the US and the world are left to deal with his "achievements". Blair was finally forced to resign or face impeachment, but instead of having to fend for himself in the big, wide world, it was a case of the old boys' network finding him a cushy number as Middle East envoy. Roy Bremner, British impressionist, comedian and playwright compares the posting to that of a mosquito engaged to find a cure for malaria. Thank God for the British sense of humour!
 
But where does all this leave those who suffer ME, GWS and other "poorly understood" conditions? We live in an environment of secrecy; of a public being misled; of blatant lies and criminal behaviour covered up with the approval of governments. Where does the buck stop? Who are the people who are making fortunes out of contrived diseases?
 
It is not hard to understand why Claire Wilson was chosen to interview Simon Wessely for the New Scientist recently - it certainly cannot have been for her journalistic abilities. At least 99.9% of us were brought up to respect the medical profession. The letters after the name were enough to ensure the figurative bowing and scraping that was demanded no matter how incompetent or how lacking some were as doctors and human beings.
 
A medical career afforded and affords sadists the opportunity to abuse their powers and no matter how gross their behaviour, the support has rarely been for the victim - the patient. How ever illogical and unintelligent the doctor; how ever flawed his diagnosis and treatment, he was never questioned. He did as he pleased and was accountable to no one. If a doctor said it, then it must be so and his word was law.
 
Then along came Simon Wessely. Where in history has a western doctor engendered such public anger and dislike as has he and by extension, his followers? There has to be a reason yet journalist, Claire Wilson, who interviewed Wessely on behalf of the New Scientist, did not challenge his contention that the hate mail he CLAIMS to receive, goes with the territory. Such public abhorrence does not go with the territory and never has. It seems the editor of the New Scientist has his own place in the ranks of the puppet brigade.
 
The ME community in the UK was particularly hard hit when the Countess of Mar, long time champion of the cause in the House of Lords, switched sides. The organizers of the recent conference in the US talked of exciting progress with a diagnostic test just around the next corner. All were encouraged to make a donation to the planned research.
 
When it became apparent that CBT was included in these "exciting" developments with what appeared to be an endorsement from Nancy Klimas, I put my papers away. Too many puppets.too many puppeteers.
 
But the worst news of all, was the Judicial Review decision. In their article "NICE Guidelines - What's Next?", Invest in ME stated the following:
 
"Though NICE, with their well-paid lawyers and establishment machine behind them, have won the Judicial Review brought against them by ME patients this is a pyrrhic victory.
 
The fact that yet another group of patients have forced NICE to have to defend its policies and guidelines - guidelines meant to make the lives of those same patients better - shows how flawed the NICE organisation is and how little trust patients have in its approach and its conclusions.
 
True to an extent, but also naive. This decision represents something far more serious than even NICE.
 
NICE we understand. We understand there is political motivation to ignore the suffering of desperately sick people. We have become used to its lack of ethics in pushing the psychiatric barrow and in refusing to acknowledge the masses of physiological and scientific research currently available. By engaging in this behaviour, it joins fellow puppets in shouting to the world that their's is an agenda that has nothing to do with truth.
 
In making the following comments, I speak for myself and no one else. I do not accuse. I simply state fact.
 
If we cannot trust the judiciary to be fair, open and honest, who can we trust?
 
If presidents and prime ministers can be corrupt, and if they can allow and even encourage corruption to spread throughout the class of society to which they belong, then judges, too, can be corrupt or at the very least, negligent. It has happened in the past and it will certainly happen again in the future.
 
I know the standard of work the plaintiffs presented as evidence. I know it was factual and meticulously researched, and referenced. I know it was written in clear, concise language with consideration for the reader's ease and convenience. I know this because I am familiar with the work of the person who did a great deal of it.
 
What I don't know is how any impartial person, judge or otherwise, could dismiss such evidence out of hand. I do not understand how such a person can consider that current psychological opinions and "treatments" are adequate when many of the victims of this cruel disease have already died and others are dying. Did the judge cover his wig with a black cloth before handing down the death sentence?
 
I cannot comprehend how an impartial person can disregard the WHO's categorization of ME as a neurological disease. We expect that from the psychiatric fraternity who have their own agenda, but the judiciary as well? I fail to see how an impartial person would not find in favour of appropriate tests to be carried out on patients, and recommend that research funding be awarded to disciplines other than psychiatry.  Did the judge even flick through the evidence presented by the plaintiffs? Did he even at any time, intend to read it? Did he think that if the plaintiffs wasted their money on a fruitless review, they would think twice about making another challenge in the future? Was he "got at" by the puppets and/or the puppeteers? Is he himself a puppet? Is he privy to the cover up surrounding these diseases and was he playing his part in that deception? Did he allow personal prejudices to dictate his decision? Does he have a conflict of interest?
 
In regard to ME, decisions made in the UK and the US generally affect us in New Zealand in some way and at some time. I do not accuse, but as an ME victim who has been declared terminally ill due to heart complications, I would like an explanation.
 
Experience has taught me not to hold my breath.
 
Gurli Bagnall
 
Patients' Rights Campaigner URSULA@xtra.do.nz
 
19 March, 2009
* * *
 
Gurli hits on a problem that I have faced with the Disability system -- the question of whether the judge even looks at the evidence. 
 
My judge's decisions are full of "statements of fact" that are carefully-crafted fiction.  I say I'm divorced and need to support myself, the judge says I have a husband who supports me financially as well as supporting my "choice" to stop working.  Well, either the judge is lying about my marital status in order to deny me benefits or I'm clearly too addled to work because I have a husband I don't remember marrying! 
 
The doctor whose report quite clearly states that I will never again work more than half-time due to doctors allowing me to deteriorate too far without proper medical care, is "quoted" by the judge as saying that I'm malingering.
 
The judge's own psych expert, after finding significant cognitive and memory dysfunction, was dismissed as incompetent, and the judge's own VocRehab experts, who have unanimously testified that there are no jobs I could do, are never even acknowledged as being present, lest he have to admit that they did not testify the way he needed them to in order to deny me benefits.
 
I have plenty of evidence, including "sky high" and "off the charts" objective blood tests, which is never referenced in the decision because it doesn't support the result the judge wants to reach.  In his view, everyone who claims to be disabled is automatically guilty of defrauding the system, and will continue to be guilty until they can prove themselves innocent, with the caveat that mountains of evidence will not be enough to prove your innocence because that evidence will either be ignored or misconstrued.
 
Fortunately, I have a background in law and know how things can be parsed to say something else entirely.  One of the forms my doctor is regularly asked to fill out includes a question "did you advise the patient to stop work?"  The simple answer to that would be for him to check the box No; however, we both know that would be twisted to imply that I stopped working of my own volition and the doctor doesn't think I'm disabled, therefore, every time he fills out that form, we have to be sure to hand-write in "patient stopped working several years before her first appointment with me", so that it's clear he didn't need to advise me to quit my job, because I'd already been fired for being too ill to work.  The question is, how many more people find themselves denied benefits because their doctor simply checks No, rather than explaining that when the patient lost her job, she also lost her insurance, and has therefore changed doctors since she was told to (or forced to) stop working?  (In my case, my doctor died, so I had no choice but to find a new doctor who cannot say that he, personally, was the one who first told me not to work.  He continues to feel that I "should" not work, but will not order me to stop doing something which is clearly beneficial to my self-esteem by providing a feeling of accomplishment, even though that may be at some expense to my physical health.) 
 
I've been accused by online detractors of being "paranoid" and lying to get sympathy, but the real-life lawyers who have reviewed the actual medical records (not merely relying on my summary, but the things written in the doctors' own handwriting) have been unanimous that "you've been screwed at every turn".  The medical consultant who reviewed my medical records was visibly horrified to hear that the reason he could not find a notation in the records about a prescription for pain pills was because after several years of begging for something, anything, I had never been given anything.  Those lawyers and that doctor are not "paranoid"; they are reacting to what they have actually seen for themselves, in the context of hundreds of other clients/patients who have received appropriate medical treatment, as opposed to the medical neglect they have seen in the doctor's own accounts of what was (or rather, what wasn't) done to help me. 
 
If I had a diagnosis of MS with the same symptoms, I would have had lawyers beating down my door for the chance to sue these doctors for malpractice, but as soon as the lawyers heard I had CFS, they realized that first they would have to convince the jury that CFS is not just a punchline, and the prejudice against the disease was more than they were willing to gamble their contingency fee on.
 
 
 
  

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Differentiating CFS from Depression

Thanks to Tom for this one!
 
> what are the CFS symptoms which depressed people don't usually have?
> Sue
 
Good to see somebody is reading the stuff. (Somebody has suggested I should do a blog but I have other work I should really be doing)
 
Here's an extract from the paper. There would be other information on the Internet on this topic. Perhaps other people will post on it - I've a lot to be doing at the moment.
 
"However, several CFS symptoms, including prolonged fatigue after physical exertion, night sweats, sore throats, and swollen lymph nodes, are not commonly found in depression."
 
~~~~From the following paragraph~~~~~~~
 
Fatigue, sleep disturbances, and poor concentration occur in both depression and CFS. It is important to differentiate those with a principal diagnosis of MDD from those with CFS only. This is particularly important because it is possible that some patients with MDD also have chronic fatigue and four minor symptoms that can occur with depression (e.g., unrefreshing sleep, joint pain, muscle pain, and impairment in concentration). Fatigue and these four minor symptoms are also defining criteria for CFS. It is possible that using this broadened new CFS empirical case definition (Reeves et al., 2005), some patients with a primary affective disorder could be misdiagnosed as having CFS. Some CFS investigators would not see this as a problem because they believe that CFS is mainly a psychiatric disorder and that distinctions between the two phenomena are superficial and merely a matter of nomenclature. However, several CFS symptoms, including prolonged fatigue after physical exertion, night sweats, sore throats, and swollen lymph nodes, are not commonly found in depression. In addition, although fatigue is the principal feature of CFS, fatigue does not assume equal prominence in depression (Friedberg & Jason, 1998; Komaroff et al., 1996). Moreover, illness onset with CFS is often sudden, occurring over a few hours or days, whereas primary depression generally shows a more gradual onset. Individuals with CFS can also be differentiated from those with depression by recordings of skin temperature levels and electrodermal activity (Pazderka-Robinson, Morrison, & Flor-Henry, 2004). Hawk, Jason, and Torres-Harding (2006) used discriminant function analyses to identify variables that successfully differentiated patients with CFS, MDD, and controls. Using percentage of time fatigue was reported, postexertional malaise severity, unrefreshing sleep severity, confusion/disorientation severity, shortness of breath severity, and self-reproach to predict group membership, 100% were classified correctly. In summary, CFS and depression are two distinct disorders, although they share a number of common symptoms. It is possible to appropriately differentiate MDD from CFS if one uses appropriate measures.
 
 Tom Kindlon (10 March 2009)
 Title: Study finds 38% of those with a Major Depressive Disorder satisfied  these criteria for CFS (i.e. they lack specificity)
 
 
* * *
I've had doctors try to tag me with depression because I listed a few of the symptoms that occur in both, whereas psych evaluators have repeatedly, for the past 21 years, pointed out that the symptoms that I report are symptoms also seen in physical illness -- someone with the flu would spend just as much time sleeping as someone with depression.  The psych evaluators don't find the emotional components that they need to see in order to make a depression diagnosis.
 
It was the psych -- not the doctor -- who pointed out that even though it was a low-grade fever, nonetheless, a fever is indicative of a physical problem and not an emotional one, and recommended the doctor continue looking for a physical cause.  Most decidedly not what the doctor wanted to hear when he was trying to wash his hands of a "difficult patient" by sloughing her off onto a psychiatrist!  And, therefore, the doctor simply refused to accept the opinion of that psych, demanding a better and more expensive one; clearly, he was going to reject any opinion that didn't say I was just lazy/crazy until finally some shrink said what he wanted to hear.
 
The problem is that many people, including MDs, are accustomed to the magazine type checklists "if you have any 3 of these 8 symptoms", where depression is a Chinese menu diagnosis requiring "some from Column A and some from Column B".  Merely reporting the right number of symptoms isn't enough, if you aren't reporting emotional problems such as crying, low self-esteem, suicidal thoughts ....
 
When a CFS patient says they "can't" do things, it's not the same definition of "can't" as used by a depressive who, due to low self-esteem, thinks they're too stupid or clumsy or whatever to be able to do it -- a CFS patient has probably tried and failed, repeatedly, and is therefore reporting a fact rather than an opinion.  Instead of doctors badgering or cajoling the patient to do more, they need to first ask "how do you know you can't?"  Despite my doctor's assertions that I'd be surprised how much I could do if I tried, I was, in fact, surprised at how often I failed, because these were things that I knew I knew how to do.  I have a history of hooking up home electronics in a matter of minutes without even reading the directions; when the CFS is fully active, I can spend an hour on it before screaming and giving up in frustration.  But that's not the question the doctors ask, because that's not the answer they want to hear! 
 
Knowing now what I didn't know in 1987, I make a point of feeding the doctors the symptoms that I know differentiate CFS from depression.  End result, because I didn't say what he wanted to hear, one of the doctors assumed I was giving an inaccurate history, "nothing you said made sense!", proving once and for all that he did not know enough about CFS to know that everything I said would have led him directly to a CFS diagnosis, because I was intentionally giving him the clues that he should discard the depression diagnosis, I had the wrong symptoms.
 
Typical doctor, he played the Blame Game.  He's not at fault for making a misdiagnosis, I'm at fault for not saying what he wanted to hear.
 
 

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Dr. Ian Gibson's Statement about CBT/GET


DR IAN GIBSON MP WITNESS STATEMENT TEXT - NICE JR.
 
Dear All,
 
Dr Ian Gibson has given me permission to put his witness statement in support of our Judicial Review case of the NICE "CFS/ME" Guideline (CG53) online.
 
The full text of Dr Gibson's statement is now reproduced below and, as said previously, copies of the original document are available for viewing (and pdf download) on-line at the web addresses below.
 
Best wishes,
 
Kevin Short. 18 March 2009.
 
 
``````
 
TEXT OF DR IAN GIBSON'S WS IN SUPPORT OF FRASER & SHORT v NICE:
 
Mr Jamie Beagent Leigh Day & Co Solicitors Priory House 25 St John's Lane London EC1M 4LB
 
Our Ref: SHOR01001/01081040/jb
 
21 July 2008
 
Dear Mr Beagent
 
Re: Douglas Fraser & Kevin Short v NICE Case Number: CO/10408/2007
 
I have been Member of Parliament for Norwich North since 1997 and have a background and interest in science and health issues: I taught in the School of Biology at the University of East Anglia from 1965, was Dean from 1991 to 1997 and was made Honorary Professor in 2003; I served on the House of Commons Science & Technology Select Committee and was its chairman from 2001 to 2005.
 
In 2005 I established and chaired a cross-party ME/CFS science inquiry with members from both Houses of Parliament, The Group on the Scientific Research into ME (GSRME), that reported in November 2006; The GSRME was a NICE Stakeholder; I am currently Secretary to the All Party Parliamentary Group on ME.
 
I am writing to support Kevin Short and Douglas Fraser in the Judicial Review of the National Institute for Health and Clinical Excellence (NICE) Guidelines for ME/CFS. I am unhappy with the current NICE Guidelines on ME/CFS. I am also concerned that the composition of the Guideline Development Group (GDG) was unbalanced and unrepresentative and consequently excluded biomedical expertise.
 
The current guidelines recommend cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the `clinically excellent' first choice treatment for most patients; however the guidelines understate the potential harm with graded exercise.
 
The study by A Peckerman, J Lamanca et al, for example, found that in severe cases ME/CFS patients may also develop reduced circulation which may lead to heart conditions: so graded exercise may be potentially fatal for them.
 
There is a considerable body of international peer-reviewed evidence and expert opinion giving some indication that graded exercise therapies may also cause harm to patients other than just the most severely affected.
 
This suggests further biomedical research on such matters is urgently required. That the GDG did not adequately consider the large body of existing international evidence means they were in no position to make the recommendations they did on the use, efficacy and safety of such therapies.
 
NICE claims that both CBT and graded exercise therapy are supported by an adequate evidence base, however, the GDG relied on a very small number of controversial randomised control trials (RCTs).
 
The patient selection criteria for participating in the trials were too wide and therefore allowed non-ME/CFS suffers to participate.
 
It is also misleading to refer to CBT & GET as `treatments' of `choice'. They cannot properly be described as treatments, since, as NICE admits, they do not address the core pathology of ME.
 
Neither is there effective choice given that many patients will be denied much of the knowledge they need to make informed decisions and there is little alternative to CBT GET on offer in the NHS.
 
CBT/GET have also been rejected by ME patient charities in the UK. The NICE Guidelines give the false impression, to doctors, politicians, and the MRC, that effective treatments are available for ME patients.
 
NICE would do better to honestly admit that their core therapy recommendations are not properly evidence-based, and to use this admission as the starting point for an adequately-funded search for a cure. We should not forget that ME patients have a legitimate right to aspire to a cure. Far too many doctors appear to have lost sight of that objective.
 
That NICE did not adequately take into account the general international biomedical evidence base was highlighted by the GSRME committee of senior parliamentarians I chaired in 2005-6 who were concerned with both the psychiatric dominance in the current UK ME research programmes and patient selection criteria they use.
 
I am therefore disappointed that the NICE GDG did not adopt or endorse high quality internationally recognised patient selection and diagnostic criteria such as the Canadian Criteria even though the latter were mentioned in the Guideline.
 
I am also concerned that the NICE GDG did not properly fulfil its remit and did not properly adhere to the internationally accepted high standards of guideline development such as the European Union AGREE instrument of which NICE is a signatory.
 
The NICE GDG also failed to endorse the World Health Organisation definition of ME/CFS as a neurological disorder despite the fact the Department of Health and Government Ministers have repeatedly confirmed that they do agree with this classification. I do not believe that the NICE CFS/ME Guidelines are fit for purpose.
 
Yours sincerely
 
Dr Ian Gibson MP for Norwich North Secretary to the All Party Parliamentary Group on ME
 
 
 

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More from Tom Kindlon on CBT

 
 
Prof. Wessely refers to meta-analyses and a Cochrane Review.
 
A meta-analysis by Malouff (2008) shows that the hype of Cognitive Behavioural Therapy (CBT) as a treatment for CFS isn't justified. An average effect size of all the outcome measures in the studies was calculated as 0.48. This Cohen's d value is less than the 0.5 threshold generally required for a treatment to be seen as "moderately effective".
 
A 2008 Cochrane Review analysed the data of CBT trials in another way and found that, with regard to fatigue levels, 40% improved following CBT versus 26% in usual care. At follow-up, there was no significant difference.
 
~~~~~~~~~~~~~~~
 
 
 
I forgot to say in my comment. Outcome measures in CBT and GET trials have generally been self-report questionnaires. CBT and GET claim to work by getting the patient to do more.
 
However invariably this is not being tested by actually measuring whether the patient is doing more.
 
This is interesting because a study was published recently on this issue. Friedberg F, Sohl S. Cognitive-behavior therapy in chronic fatigue syndrome: is improvement related to increased physical activity? J Clin Psychol. 2009 Feb 11.  It found that despite self-reporting improvements on some questionnaires, patients were actually doing less activity.
 
The initial protocol for a multi-million pound trial to test CBT and GET for CFS, the PACE Trial, involved measuring people's activity levels using actometers before and after they did they management program.
 
However, by the time the protocol was finally published, the authors had decided to drop the use of actometers at the end (they're still using them at the start).
 
This is a bit like doing a drug trial for example on cholesterol, measuring patients' cholesterol before the trial but not measuring it at the end. Or a weight loss program where you weigh people at the start but at the end you just ask them do they think they've lost weight. I think it was done because people feared it might show that CBT and GET aren't increasing people's activity or not by much (other research has suggested this) - people can be doing longer walks but then cutting out other activity in the rest of the day (which Friedberg found).
 
And this trial is costing nearly £4m of taxpayers' money.
 
People should be wary of all the hype about CBT and GET for CFS
 
 
* * *
This is one of the things that healthy people don't consider about CFS patients: what do we have to give up in order to do something?  We don't add things to our schedule, we substitute them for something else.  If you want to go to the mall, you may choose to not do the laundry that day or to eat what's already in the crockpot instead of cooking something new.  But you don't go to the mall and keep up your normal workload.
 
Several years ago -- fully knowing what was going to happen -- I decided to humor one of my doctors who was insisting that I'd feel better if I took a short daily walk.  Exercise will invigorate someone who has depression, and I'm sure that was his thinking, because he's repeatedly demonstrated complete ignorance of what CFS really is.  He refused to accept my statements about what had happened in the past, so I was prepared to take detailed notes on the exact length of the walk, how long it took, precisely what symptoms it aggravated, because all I really remembered about the past attempts were that I tried and got worse, but couldn't be precise about any of the data. 
 
Due to getting a prescription that helped a major symptom, my health was a bit better than it had been the previous few years, I had no work coming in, I thought I could take the risk of exercising.  And it was a good thing my client was not going to be sending me any work that week, because in order to take that walk, I had to give up almost everything else.  I was not going to be able to work if I was taking that walk.  I would come home and collapse into bed for the rest of the day.  If I went out at 10 or 11 AM, I might feel up to dragging myself to the kitchen 8 hours later to fetch something simple for dinner.
 
To the doctor, the fact that I did complete the prescribed walk every day that week probably would have been "proof" that I had recovered from my CFS; but taking that walk at the expense of doing the laundry/cooking/cleaning/working proved to me exactly what Dr. Friedberg's study found, that I was simply juggling my priorities.  For one week, I could skip the chores and my job, but at some point, I was going to run out of clean underwear or get some work coming in, and then would have to change my Things To Do list, to remove the walk from the schedule in order to have the energy to do the laundry or my job.
 
The only thing taking the daily walk actually proved was that what I have is not depression -- I didn't return to the house raring to go, with the energy to scrub the house from top to bottom; as any CFS expert would expect, I returned exhausted and in need of several hours sleep.  At the end of a week of daily walks, I actually had less energy than I did at the beginning of the week and called a halt to the experiment before I became so debilitated I landed in the hospital.
 
Dr. Peckerman's study showing that the most severely debilitated CFS patients are on the verge of heart failure makes the recommendation to exercise potentially fatal -- I saved my experiment till I felt up to risking a decline, and had every intention of stopping the experiment as soon as I hit a certain level of decline, but if you're worse off than I was, you might want to ask your doctor if he's willing to sign some document taking full legal and financial responsibility for his ill-advised suggestion that you exercise your way back to health.  Some patient group that has a lawyer as a member might want to come up with a properly-worded document for the rest of us to use for that purpose; if the doctor truly believes his advice is correct, he should have no problem with signing it.  If he quibbles over signing the document, then ask him why you should risk your life on something he's not willing to swear will not kill you.  :)
 
 

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Klimas Patient/Caregiver Retreat

Greetings!

Thank you so much for your interest in my new clinic, The Center for Chronic Fatigue & Immune Disorders, the first of which will open sometime this summer or fall.  I am very excited to have the opportunity to train new doctors who will see more patients and continue to do research on this serious and enigmatic illness that is Chronic Fatigue Syndrome.

While we work on the infrastructure necessary to open a first-class clinic, we wanted to let you know about our Patient Caregiver Retreats being offered.  We have scheduled two retreats for this spring and will let you know when more are scheduled.

If you are interested in attending one of the retreats, please email us at cfs.clinic@gmail.com as soon as possible.  These retreats are very small in order to provide the participants with the greatest amount of interaction with the retreat leaders.

The dates available are Retreat 1) Friday, April 24 to Monday, April 27 and Retreat 2) Friday, May 1 to Monday, May 4.

These retreats are non-clinical, relaxing get-togethers which will give both patient AND caregiver the chance to learn more about CFS as well as some very hands-on tips for living with and coping with all that accompanies CFS.  Held in a private home in Central Florida, these retreats will be simple and informal.  Limited to 15 people, the group size will enable both patients and caregivers to meet and talk with the workshop leaders as well as their fellow participants.  While we will endeavor to make you as comfortable as possible during your stay, please remember that this is not a hotel and we can not accommodate every request.  The site is handicap accessible, however, in order to get the most out of the retreat workshops participants should be able to move around and engage in mild conditioning exercises.

Retreats will offer participants:
       
  • actual custom-designed conditioning exercises CFS patients can do at home
  • healthy, nutritional and realistic food and eating suggestions for real life living
  • discussion on coping strategies for both patient and caregiver
  • a serious but fun workshop on sex, intimacy and CFS
  • tips for managing your eve r growing health care team
  • latest research developments in the field
  • and more!

The retreats are all inclusive – food, lodging and the workshop – are all included in the price.  Space is limited and will be assigned on a first come, first served basis.  The faculty for the retreat includes Nancy Klimas, MD,  Jackie Junco MD,  MPH, and Connie Sol, Exercise Physiologist.  This team, handpicked by Dr. Klimas, will offer the participants and excellent information packed retreat.

The cost for two – patient and caregiver – is $1,800.
The cost for one person is $1,000.

A sample schedule is attached.  Please remember that this schedule is not final and is subject to change without notice.
Once a reservation is confirmed, full payment is required at least 10 days prior to the retreat.  If payment is not received, the reservation will be canceled and offered to the waiting list. Because of the small number at each retreat, full refunds cannot be offered.  If a reservation is canceled up to 7 days before the retreat, a 50% refund will be offered.  No refunds will be offered within 7 days of the retreat.
 
This invitation has been sent to you because you expressed interest at the IACFS/ME conference in Reno, NV.  If the retreats are not filled from this list by March 28, the retreats will be made public.  So if  you're interested – PLEASE RESPOND BY MARCH 28, 2009 to reserve your space at these new CFS retreats.

Should you have any questions, please call (305) 851-3559 or just respond to this email to speak with Hannah Olanoff.  She will work to answer any questions you might have.

I look forward to working with you in the future and to seeing you at our retreats!
Sincerely,

Nancy G. Klimas, M.D.





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Thursday, March 19, 2009

Dr. Abbot's full witness statement re CBT/GET

ACT, NOT: DR NEIL ABBOT'S FULL COURT VERSION WITNESS STATEMENT FOR THE
NICE JR.

Dear All,

In his witness statement for the Fraser & Short v NICE Judicial Review,
experienced specialist research scientist, Dr Neil Abbot of ME Research
UK, systematically takes apart the RCT evidence that NICE used to
justify recommending CBT/GET for ME patients. He points out the highly
inadequate patient selection criteria used in the evidence base along
with other serious qualitative flaws. Dr Abbot concludes with regards to
NICE CBT/GET recommendations for ME patients: "Whatever the merits of
these therapies in themselves for psychological illnesses, it is wholly
irrational, on the basis of the RCT evidence available, for them to be
recommended as the end points of a Pathway to care."

The full court version of Dr Abbot's Witness Statement is now available
for download as a pdf file at the web address below.

Best wishes,

Kevin Short.
contact@angliameaction.org.uk

http://angliameaction.org.uk/NICEJRdocs/Neil_Abbot_MERUK_WS.pdf

[permission to repost].
 

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Obama Transition Team Report Link

http://www.vtcfids.org/images/longreport.pdf
 
 
This is the Obama Transition Team report we submitted.  The good news is, the Obama team DID read it and put it on their website.
 
If you're going to write letters to politicians, the AMA, even your local newspaper, send them a copy.  It makes the point that having health insurance is not enough -- the authors of the report had insurance, but couldn't find doctors who knew what they were doing.  The research simply isn't filtering down to the front lines where it can be useful.
 
In fact, there's a statistic out there that it takes 17 years -- SEVENTEEN YEARS!!! -- for the stuff that researchers find to become commonly offered as treatment, because many doctors will continue to do what they were taught in medical school, even after it's been proven to be useless (or worse yet, detrimental).  That's a whole generation of CFS patients who will continue to suffer because their doctors haven't learned the things that you're learning by reading this blog!
 
Please, educate your doctors so they can help other patients.  Refer them to this blog (and other online resources).  Print out the relevant articles for them. 
 
If your doctor refuses to learn, don't just switch doctors, give him a negative rating on websites such as HealthGrades and RateMDs, and say exactly why you left his practice.  If he's part of a large medical group, also tell Admin so they can take remedial action; they won't tell me why he's no longer there ("employee privacy"), but the doctor who caused me and my friend the most problems is no longer there -- he then lied to me about who his current employer is, clearly not wanting me to tell another medical group the truth about his prejudices.
 
 
 
 
 

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Wednesday, March 18, 2009

Website for Disabled People

 
"Whether looking for a date or a friendship, be assured you are connecting with others who understand physical limitations."
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CFS and Exercise

"Cracking the Foundations - The Pacific Fatigue Lab and Chronic fatigue Syndrome (ME/CFS)" Phoenix Rising: An ME/CFS/FM Newsletter (Jan 09) by Cort Johnson
http://aboutmecfs.org/News/PRJan09Pacific.aspx
 
Could a small lab in the Central Valley of California shake the CFS research field with a quake of epic proportions? Change how the disease is viewed? How it's defined? Legitimize the disease once and for all? It's possible that given enough resources the Pacific Fatigue Lab at the University of the Pacific in Stockton, California may do all of these.
 
Run by three exercise physiologists, Dr. Christopher. Snell (Ph.D), Dr. MarkVan Ness (Ph.D) and Staci Stevens (M.A.), a former grad student and now a researcher with chronic fatigue syndrome (ME/CFS), the lab focuses on a very basic and still very misunderstood aspect of CFS – why patients have so much trouble with exercise.
 
Staci Stevens, the founding Executive Director of the Pacific Fatigue Lab explained. "Many researchers look at ME/CFS patients when they're at rest- at baseline. But as any ME/CFS patient knows, the real problems occur when their systems are under stress due to too much activity. We're taking a close look the physiology of CFS patients as they undertake the most stressful activity of all – exercise."
 
Since oxygen plays a key role in energy production, exercise physiologists use oxygen consumption during exercise to tell how much energy a person's body is capable of producing. Having people pedal a stationary bicycle until they can pedal no more tells researchers how much air their lungs can take in (Ventilation Max) and therefore how much oxygen they use to produce energy (VO2 Max) at their peak level of effort. Since oxygen plays a key role in the energy production process this test effectively tells researchers how much energy is being produced.
 
Given the fatigue and post-exertional problems often noted in ME/CFS one would think aerobic exercise tests would have played a key role in legitimizing this disease, but instead they've given rise to further skepticism. The ability of many patients to pass them has added to confusion about a disease characterized by the word fatigue. How could CFS patients be so fatigued if they're able to generate normal amounts of energy?
 
A New Approach - The Pacific Fatigue Lab researchers realized, however, that while researchers may have been asking the right questions they were asking them in the wrong way. Many ME/CFS patients can, after all, get through a single 'workout' or a single day or single afternoon at work okay only to 'crash' afterwords. Until now, though, no one's taken a close look at the ME/CFS patient's ability to produce energy when they're in a crash – an odd oversight in a disease whose symptoms are so tied to activity. (Indeed, study after study is showing that many variables which test out normal or near normal when ME/CFS patients are at rest are abnormal when their systems are put under stress). With the Pacific Fatigue Lab doing a new exercise testing regime, two exercise tests two days in a row and other tests (now known as the Stevens' Protocol) they've given the post-exertional problems ME/CFS patients have reported for so many years a
chance to show up – and they have.
 
Their results are both profound and disturbing. About half of the ME/CFS patients they've tested do, in fact, 'fail' or significantly under perform in the first single exercise test – they cannot generate normal amounts of energy even when they're 'rested'. It's the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well--and fail spectacularly.
 
The amount of impairment the Lab see's can be astonishing - some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old. In a hospital setting his cardiopulmonary exercise profile would suggest he had heart failure.
 
Revolutionary Findings - According to modern medical science this shouldn't occur. For decades researchers have shown that human beings, under virtually all conditions and in a variety of disease states, can take an exercise test to exhaustion, recover and return the next day and score the same the next day. It doesn't matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health - has an amazing ability to quickly return to a baseline level of energy. That is until now.
 
But it's not just that chronic fatigue syndrome (ME/CFS) patients are failing these tests, it's also the unique way they're failing them that's raising eyebrows. Decades of research have shown if you a take a female of W age and have her do X amount of exercise at Y heart rate she will exhibit Z levels of oxygen consumption. Researchers have believed these algorithms are set in stone but they're not holding up in chronic fatigue syndrome (ME/CFS) patients. That they're not suggests that something has gone awry in the basic physiological processes the body uses to produce energy in this disease.
 
Even after 20 years in the field Staci Stevens' excitement was palpable. The implications of her findings are profound not just for ME/CFS patients but for the field of exercise physiology. She said "We are charting waters that have never been charted before. It's an exciting time to be involved in CFS research!"
 
The lab's findings are so unusual that their peers sometimes can't believe what they're hearing. Since decades of research have indicated there's no need to do repeat exercise tests, they are simply not done. Until recently the Pacific Fatigue Lab may be the only lab in the world that regularly does them. I asked Staci Stevens how her colleagues across the country were reacting to this data – were they excited? She said some of them say, "It's just not possible, they think we must have imputed the data wrong but others are enthralled". She said one colleague on the east coast who's doing the tests said that after 30 years in the field, "I'd never seen anything like this".
 
A Quick Road To Legitimacy? - Their findings undermine long held beliefs not only about chronic fatigue syndrome (ME/CFS) but about exercise physiology as well. Overturning paradigms is not easy but the Pacific Fatigue Lab has an ace in the hole in this regard. Many ME/CFS researchers and patients have looked to the future for technological breakthroughs that will legitimize the disease once and for all. The new technologies coming to bear on ME/CFS are exciting but new technologies take time, sometimes long periods of time, to be assimilated and accepted.
 
There's nothing new, however, about the technology the Lab is using; in fact it's boringly well established. The aerobic exercise tests they do form an essential part of every cardiologist's and pulmonologist's tool kit. Once the Pacific Fatigue Lab's test results are replicated and make it into the broader research community acceptance should come relatively quickly. In fact if one were to chart the quickest road to legitimacy for this disease it would very much look like the path the Pacific Fatigue Lab has embarked on - charting gross abnormalities in well accepted, well established tests. If the Pacific Fatigue Lab's findings hold up, the news couldn't be better for chronic fatigue syndrome (ME/CFS) patients.
 
Redefining Chronic Fatigue Syndrome (ME/CFS) – The Pacific Fatigue Lab's results should also clarify one of the key questions concerning the disease: whether researchers have been mixing apples and oranges in their studies. For decades researchers have worried that the disease's vague definition allows people with different illnesses to participate in research studies. The most pressing question concerns whether 'post-exertional malaise' (PEM), which signifies dramatically worsening symptoms after physical or mental exertion, uniquely identifies this disorder or is simply one symptom among many.
 
One side, lead by the producers of the Canadian Consensus Definition of ME/CFS, believes that post-exertional malaise (PEM) is a hallmark symptom that reflects unique physiological processes. They believe that allowing people without this problem to participate in chronic fatigue syndrome (ME/CFS) studies may have greatly hampered efforts to understand this disease.
 
The other side, exemplified in the Center for Disease Control's (CDC) empirical definition of 2005, believes that post-exertional malaise (PEM) is one of many symptoms present in the disease. They argue that the most important feature of the disease is unexplained degrees of 'unwellness' that interfere significantly with people's work, personal, social, etc. activities. They believe some different process is at work.
 
The Pacific Fatigue Lab's results suggest that the Canadian Consensus group is correct; during either the first or second exercise test a large subset of patients demonstrates significant physiological abnormalities in their ability to produce energy. Another subset of patients does not. The Lab's findings suggest that these two groups should be separated in research studies.
 
Ms. Stevens could not say, however, how big the PEM subset is. The Lab has derived most of its data from three groups of patients – research subjects in the test/ re-test studies, those attempting to get disability and participants in the Ampligen trials. Many of the people they screen do exhibit PEM on the exercise tests but others do not. It will take statistically rigorous studies to determine how prevalent the post-exertional malaise group is.
 
Demonstrating that this subset does exist and can be differentiated by standard physiological tests would go a long way toward breaking up the CFS label, revamping the definition of the disease, focusing researchers in on key abnormalities, and, of course, creating a new name.
 
Answering the subset question would be tremendously valuable but the Stevens' Protocol could also have an enormous impact on another very bread and butter issue: disability.
 
A Comprehensive Disability Evaluation – CDC studies indicate that the average annual financial costs of CFS (@$25,000/year) impose an economic burden that many families cannot sustain for long. Getting disability can be the difference between absolute poverty and at least a minimum amount of financial comfort and medical attention. Without clear diagnostic or functional tests, however, getting disability has been a challenge.
 
Chronic fatigue syndrome (ME/CFS) patients don't win their disability cases because they have ME/CFS, they win when they can demonstrate they cannot function well enough to work. Fortunately, measuring functioning is what the Pacific Fatigue Lab is all about. The simplicity of the exercise tests is their grace; patients who cannot produce sufficient amounts of energy cannot be expected to function – it's as simple as that. Aerobic exercise tests have the added advantage of a long history; they've been used to demonstrate disability in heart patients and others for decades. The Steven's Protocol has the potential to produce a clarity that has been strikingly missing in this arena.
 
The Pacific Fatigue Lab offers perhaps the most extensive disability evaluation in the country. The exercise tests don't take long – 8-10 minutes with a slow windup period. – and they can have brutal after-effects– but, if successful, they are time well spent. (The Pacific Fatigue Lab will not allow severely disabled patients or those with moderate to high cardiovascular risk to take the tests. If the first test shows disability the next test is not needed).
 
They're not cheap, but even at $2,000 a pop, they present a good value for those who can afford it. (Single exercise tests typically run from $800-$1200 at a hospital. Some insurance companies will reimburse for the testing though billing insurance is the responsibility of the client). The Stevens' Protocol 8-12 minute aerobic exercise tests, resting pulmonary function tests measuring lung function, bioelectrical impedance exams measuring hydration, acoustic nasal rhinometry measuring sympathetic nervous system functioning, reaction time testing evaluating cognitive processing time, and a seven page written evaluation. Not every patient who does the disability evaluation gets a diagnosis of 'disabled,' but for those who do it can be financial lifesaver.
 
The Stevens' Protocol has the potential to rewrite the disability rules for ME/CFS. The CFIDS Association of America has already asked the Social Security Administration to take them into account but they're behind the game; the Fatigue Lab has already notched its first of several wins in the long term disability field. In fact, their first win holds a place of honor in a frame on the wall of their office.
 
Education - With all the many ramifications of the Lab's work, it's the day to day process of educating students about ME/CFS that may be the most fulfilling for Staci. She, Dr. VanNess and Dr. Snell all incorporate their latest findings into their classes; 'Here is a normal exercise stress test' they say and 'here is a CFS patient's' test. The students are enthralled and they should be; they are being exposed to cutting edge data that the textbooks say shouldn't be happening. It's exciting to be a young (or old) student on the cusp of research that has the possibility of overturning accepted paradigms. Ms. Stevens laughed and said "They love working with CFS patients. They're always asking to see the results on the last patient".
 
When these students leave the University of the Pacific they'll be ambassadors for this disease and spread the word about the unusual findings. Currently the PFL has four graduate students and a handful of undergraduates working with them.
 
They also provide hope for a field that is not attracting many new faces. In fact, the lack of young researchers may be the biggest long-term problem the research field faces. The researchers that got engaged in the field when it was new and not subject to so much controversy will be retiring in the not so distant future. Ms. Stevens lamented the lack of young faces at the Symposium on Viruses in CFS in Baltimore in May, 2008.
 
The chronic fatigue syndrome (ME/CFS) research world is catching onto the implications of the Pacific Fatigue Lab's work. A repeat exercise study by Ellie Stein in Canada recently opened and one is reportedly underway in Europe. Ms. Stevens readily acknowledged that replicating results has been difficult in ME/CFS, but she's confident that their results will hold up. She's done 1,000's of single cardiopulmonary exercise tests on chronic fatigue syndrome (ME/CFS) over the years and close to a hundred with the Stevens' Protocol at the Pacific Fatigue Lab. Whether in Stockton, Stanford, Incline Village or Ithaca, New York they see the same general pattern again and again, a unique metabolic dysfunction that characterizes and objectifies the most mystifying symptom in the disease, post exertional malaise.
 
(Research, education, treatment…does this sound familiar? Advocates have been asking for the federal government to produce Centers of Excellence that combine research, treatment and education. The Pacific Fatigue Lab is a COE in miniature. )
 
Opportunity – The Pacific Fatigue Lab is a remarkable accomplishment – a testament to one grad student's persistence – and a small coterie of advisors and mentors who made her passion their own. University affiliated chronic fatigue syndrome facilities are almost non-existent. Aside from the Whittemore-Peterson Neuro-Immune Institute in Reno, Nevada (which won't open its doors on the university campus for another two years) there may be no other University sponsored Chronic Fatigue Syndrome lab in the country. Special thanks must go to the Sport Sciences Department Chair Dr. Christopher Snell and to the University of the Pacific for having the vision to recognize the opportunity the Lab presents and backing it despite of the controversy still surrounding this disease.
 
The opportunities the Lab presents for this disease are staggering. Yet the contrast between the opportunity present and the resources available is a little heartbreaking.
 
The Pacific Fatigue Lab is entirely volunteer run by three people who are trying to analyze their data, get grants and publish on their off-time. Somehow, they've managed to create a beautiful lab but they're still missing key ingredients. Their papers have mostly been published in less well known journals, they don't have a website to get the word out, and they don't have a strong funding base. Indeed the theme of overworked (and unpaid) researchers trying to make do on a shoestring is a constant one in the ME/CFS research community.
 
I asked Staci Stevens about doing heart rate variability (HRV) studies. Given their ability to provide data on how the autonomic nervous system is functioning –which appears to be a key player in the disease – HRV studies seem like a perfect fit for the lab. She said 'I'd love to do HRV but we don't have the funding'. Staci noted that "This doesn't need to be rocket science. We could go a long way just by focusing on some simple areas that the research community has basically ignored" One gets the idea that there are many things the Pacific Fatigue Lab could do to advance the science of ME/CFS if they just had a bit more money.
 
But there's only so much money and so much time in the day. The Pacific Fatigue Lab has been able to produce what it has through two private grants from the CFIDS Association of America and from funds it gathers from doing its comprehensive disability studies and firefighter fitness testing on the side. Currently the Lab's researchers are focused on analyzing the results from the Stanford Montoya Valcyte study and the data from their latest repeat exercise study plus a new study, all while they're teaching full loads.
 
The Next Level - One wonders what these researchers could achieve if they had more time and money to focus on a subject that they're obviously so passionate about.
 
I asked Staci how much money would it take to move the Lab to next level? She said 'For sixty thousand dollars we could hire a Ph.D in exercise physiology to write grants, run the studies and write up the data. There are plenty of people who would love to get a job to do that". Hiring a full time clinical testing supervisor who could take over the grunt work of data input would allow them to focus more on the big picture. Monetarily speaking this is chicken feed in the medical world; they're not far at all from creating a lab that could start turning out study after study.
 
Ms. Stevens was reluctant to delve into the thorny issue of federal financing for CFS research but it was clear that she felt that whatever semblance of a spigot that had once been turned on has been mostly turned off. The loss of the Cooperative Research Centers at the NIH in 2002 was a severe blow. The Pacific Fatigue Lab's efforts to get an NIH grant failed. When I asked if the Centers for Disease Control had shown an interest in her work she said 'Interest and funding are two different matters and they are struggling with funding as well.' One would think that somewhere in a community of 1,000,000 patients a way could be found to assist them in their work.
 
Advocacy - When the federal system fails to assist people in need one must turn to advocates to put pressure on the government. Ms. Stevens agreed that advocacy was critical but noted that the problems with exhaustion chronic fatigue syndrome (ME/CFS) patients faced made them ill-equipped for advocacy. Still she noted that when she served on the federal advisory committee for CFS (CFSAC) they typically had less than 5 patients show up for the meetings – and they tended to be the same five patients - not a strong signal to the government to move on these issues.
 
The Future - The Pacific Fatigue Lab is creating a body of work that has the potential to revolutionize the medical community's understanding of this disease. The possibilities are impressive; legitimize ME/CFS, rewrite the disease's disability rules, create viable subsets, focus the attention of the research community on the post-exertional period to determine how this disease is defined and guide both non-pharmacological and pharmacological treatment to improve quality of life for patients.
 
How well it will be able to achieve these goals will in good part depend on the resources it has and how well it can get the word out about its findings. Indeed the Lab is still mostly a secret in the ME/CFS community. Ms. Stevens said that as they've been accumulating data and analyzing it that "We've been kind of underground" but she also felt it was about time for them to come out. Chronic fatigue syndrome (ME/CFS) patients can only hope they come out in a big way indeed.
 
Pacific Fatigue Lab at the University of the Pacific: 3601 Pacific Avenue, Stockton, CA 95211; (209) 946-7649. email: sstevens@pacific.edu  
 
Contribute to the Pacific Fatigue Lab through the Workwell Foundation; a non-profit foundation created by Staci Stevens to advance research into chronic fatigue syndrome (ME/CFS). Phone: (209)599-7194. email: staci@workwellfoundation.org
 
* * *
"According to modern medical science this shouldn't occur."
 
Modern Medical Science says that about a lot of things that CFS patients experience as a matter of course.  I try to find it amusing -- rather than annoying -- when some symptom that is fully acceptable in another disease is dismissed as "impossible" when I bring it up.
 
I pressed one doctor on whether there were other diseases in which the patients shouldn't exercise, it would make them worse, and he came up with some form of dystrophy, quickly adding "but you don't have that".  Ah, but there *is* such a disease in which this is an accepted problem, and my only point was getting him to think outside the box, that there may be some disease(s) in which exercise is not a cure-all.  Suddenly, he had to re-think his conclusion that I "had to" be lying when I said exercise made my symptoms worse.
 
 
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