Saturday, October 8, 2011

The Challenges of Living with Invisible Pain | Psychology Today

The book on CFS

 

Perspectives On Diseases & Disorders

  • Chronic Fatigue Syndrome

  • Author Sylvia Engdahl
  • Published by Greenhaven Press

Each volume in this timely series provides essential information on a disease or disorder (including symptoms, causes, treatments and cures); presents the controversies surrounding causes, alternative treatments, and other issues; and offers first-person narratives from people coping with the disease -- either as patients, family members or caregivers. Essays are carefully edited and introduced to make them easily accessible to student researchers as well as general readers.

By focusing on the controversies surrounding diseases and disorders, this series supports debate assignments and helps develop critical thinking skills, and also helps patients and family members learn about and deal with a disease or disorder. Each volume includes numerous color photos, charts, graphs and tables as well as a glossary of key terms, a chronology of developments relating to the disease or disorder, a bibliography to assist with further research, a list of organizations to contact and an index.

Review:

"High school students researching health topics will be very thankful for this highly informative and homework-friendly series. Teens with a personal interest or health concern will also find useful and fascinating material and a list of organizations to contact for further information and help. This series is a must-have for any library serving high school students who might be curious about or need to research the stubjects."
--VOYA, May 2008

See more reviews >>

  • Published/Released: September 2011
  • ISBN 13: 9780737757736
  • ISBN 10: 0737757736
  • DDC: 616
  • Product number: 262389
  • Shipping Weight: 0.88 lbs (0.40 kgs)

Price: US $38.95

  • (20% Discount for Schools and Libraries in the U.S. and Canada)
 
Detailed Table of Contents

Talk to Anderson Cooper

 

Everyone has a story. I'd love to hear yours!

I'm a big believer in the power of people's stories. On my new daytime talk show, I look forward to sharing compelling stories with you, stories that we can all learn from.

Every week on this Facebook page, I will ask a new question and I'd love to hear your answer. During the summer and throughout the year, my staff and I will be reading your stories, and once the new show starts September 12, we'll share some of our favorites on the show.

I look forward to hearing from you!

--Anderson

This week's question is about high school -- those of you who were already sick in HS, send him your story.  Eventually, we may be able to deluge him with enough ME/CFS stories to get him to do a show on us.

 

 

Friday, October 7, 2011

Epic Fail | CFS Untied

 
Today, Annette Whittemore from the Whittmore Peterson Institute hosted a Q&A session on the WPI Facebook page.   As expected, there were a number of hurt and confused patients trying to get to the bottom of what happened, where the science goes from here, and what to expect moving forward.  Funding issues were questioned, as were the VIP DX lab tests and the UK blood draws that appear to be in limbo.
 
http://www.cfsuntied.com/blog2/2011/10/07/epic-fail/
 
Thanks all
Khaly
khalyal@yahoo.com
khaly@cfsuntied.com

Dr. Natelson and neurological abnormalities

Dr. Benjamin Natelson has cared for patients and studied CFS for more than two decades. He will examine neurological abnormalities in an NIH-funded collaboration with Dr. Dikoma Shungu's group, whose work started with an Association grant. Read more at http://www.research1st.com/2011/10/07/brainiacs/.
 
 

Thursday, October 6, 2011

The War Has Lost A Soldier, But Gained An Angel

 
 
"She was pushed around in the medical system, and the more that she needed help, the more battle scars she began collecting. You see, our modern medical system is full of too much ego, and not enough compassion. Amberlin's illness was a mysterious one, and doctors brushed her off when they did not have the answers."
 
* * *
Three-quarters of CFS patients report unacceptable interactions with the medical profession.  The average doctor may not have the ability to do the research to cure us, but he DOES have the ability to change his attitude and offer compassion instead of arrogance. 
 
There is no sin in saying "I don't know".  In fact, in law school, we're taught to say that -- it gives us time to read up on the subject and come back with specifics instead of a gut reaction that may be wrong.
 
I've had doctors verbally abuse me for "refusing to get well".  Damn few who said anything along the lines of "I'm sorry you're feeling so poorly" or took an interest in looking for answers.  Much faster and easier for them to slap a psych label on me than to listen and sort out the symptoms to figure out why the easy-answer psych label is wrong.
 
The best thing doctors can do for patients is to shelve the ego and open the heart.
 
 

Life like this: Death

 
 
"I think it must be hard for healthy folk to understand what it is to be stalked relentlessly by Death.  To know that in the moments when you have not heard from it, you are being watched, chased from afar.  And then the distance closes and Death becomes bolder, aggressive, and ever present."
 
* * *
Some years ago, someone was trying to scare me with the possibility that something I was doing might result in death, and was horrified that I shrugged off the threat.  They could not believe I had come to grips with my own mortality long ago.  There are half a dozen times in my life I should've been either dead or in a wheelchair.  I had to deal with it back then, and I decided it didn't scare me.  I know which way I'm going when I leave this earth.
 
What troubles me is when other patients die -- those a lot younger than me.  The linked post was written in reaction to Amberlin Wu's death.  I'm almost old enough to be Amberlin's mother.  Another of our losses this week was 18 -- I'm about old enough to have been her grandmother.  Imagine losing your child or grandchild; that's how we "first generation" patients feel this week.  Our second and third generation are dying off, and we're powerless to stop it because the medical profession doesn't take the disease seriously.  We can do nothing to save "our babies"; all we can do is cry when their lives end prematurely.
 
When will it end?  And I don't mean "end in death".
 
 

Voices from the Shadows

Jean Maskuli writes:
This week, three ME/CFS patients died. They ranged in ages from 18 to 62.
Still think it's about being tired? Voices from the Shadows, a documentary,
tells the story of a disease which robs lives - and the prejudices and
misogyny of health professionals in their quest for help.

For now, the entire film is available online for free.

Voices from the Shadows
mubi.com
A compassionate and moving exposé, bearing witness to the devastating
consequences of psychiatric prejudice and medical ignorance about one of the
most prevalent illness of the 21st Century.


_http://mubi.com/films/voices-from-the-shadows_
(http://mubi.com/films/voices-from-the-shadows)

CFSAC November 8-9, 2011

The Hippocratic Oath Today

 
"some doctors see oath-taking as little more than a pro-forma ritual with little value beyond that of upholding tradition. "The original oath is redolent of a convenant, a solemn and binding treaty," writes Dr. David Graham in JAMA, the Journal of the American Medical Association (12/13/00). "By contrast, many modern oaths have a bland, generalized air of 'best wishes' about them, being near-meaningless formalities devoid of any influence on how medicine is truly practiced." Some physicians claim what they call the "Hypocritic Oath" should be radically modified or abandoned altogether."
 
 

Hippocratic Oath - First, Do No Harm

 
Oath text

Original, translated into English:[4]

I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement:

To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art.

I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.

I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.

But I will preserve the purity of my life and my arts.

I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art.

In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves.

All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.

If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot.

Classic

Classic translation into English:[5]

I swear by Apollo the Physician and Asclepius and Hygieia and Panaceia and all the gods, and goddesses, making them my witnesses, that I will fulfill according to my ability and judgment this oath and this covenant:

To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art – if they desire to learn it – without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken the oath according to medical law, but to no one else.

I will apply dietic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.

I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect. In purity and holiness I will guard my life and my art.

I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.

Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.

What I may see or hear in the course of treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep myself holding such things shameful to be spoken about.

If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honoured with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.

In the 1870s, many American medical schools chose to abandon the Hippocratic Oath as part of graduation ceremonies, usually substituting a version modified to something considered more politically and medically correct, or an alternate pledge like the Oath of Maimonides.

The Hippocratic Oath has been updated by the Declaration of Geneva. In the United Kingdom, the General Medical Council provides clear modern guidance in the form of its Duties of a Doctor[6] and Good Medical Practice[7] statements.

 Modern version

A widely used modern version of the traditional oath was penned in 1964 by Dr. Louis Lasagna, former Principal of the Sackler School of Graduate Biomedical Sciences and Academic Dean of the School of Medicine at Tufts University:[8]

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

* * *

"I must not play at God."  That also means your head must not become so swelled with self-importance that you think you're God and that no patient has any knowledge of her own symptoms and medical condition.

Three-quarters of CFS patients report negative interactions with doctors.  Perhaps they need to re-read their oath and remember that they're supposed to be "sympathetic and understanding", not obnoxious and arrogant.

Wednesday, October 5, 2011

The Kafka Pandemic: Would you say that about AIDS?

 

Whenever you hear an irrational statement about the disease in question, say, "Would you say that about AIDS?"

The idea is to lure them to where you have rhetorical parity. If the answer is yes, you are on solid ground. If the answer is no, you are on solid ground. If the person evades the question, you are on solid ground.

The Kafka Pandemic: The HGRV pandemic

A letter from Annette Whittemore

A letter from Annette Whittemore

October 4, 2011 at 6:52pm

Dear Patients and Friends,

 While I can't speak for Judy I can tell you how I feel.  I feel terrible that our relationship is ending this way. It's easy to understand why you might think of our separation as a divorce.  Judy has been with me since 2006 when we first began the institute. I hired Judy to work with me to help solve the problems that are affecting millions of people like yourself. You are now personally invested in the outcome, just as we are.    Judy has been a valuable member of a team that many of you have never met.   I have asked her to speak on behalf of the scientific efforts of this entire institute and she has done so with great enthusiasm.  In the course of her travels she has offered her hand to patients, in friendship and support, and for that we are all very thankful.   However, Judy had another important job to do as an employee of the WPI.   She knows that she, like everyone else at the institute, has to abide by a common set of rules that apply to one's conduct.  Without those rules there would be anarchy and injustice in the work place.    Judy chose a course of action which I had to respond to.  I am deeply disappointed by her choices.   Now we have to move on.   As adults, we can chose to lash out with hatred against one another or try to make the best of a difficult situation and minimize the damage to the innocent bystanders like yourself.  You are part of a caring group of people who must feel awful about having to watch this public display of cruel mud slinging on the internet.  You are right though, it isn't fair to anyone to be forced into taking sides.  I believe we have a better choice and that is to get along with each other and truly wish each other well.   Because you asked.  I will tell you how I am feeling about Judy leaving.  I'm sad for me for you and for Judy.  I will miss Judy's friendly smile and her enthusiasm for the science. I have learned so much from her.   I will miss our discussions and our trips together to various conferences and meetings.  But I have a job to do.   As the leader of this institution I have to continue to do all I can to keep our team focused and moving forward; building on the progress that we have already made in science and advocacy.  I'm lucky that I am not alone in these important efforts.   WPI has a wonderful team of researchers, doctors and administrators who are working hard every day on your behalf.  They are dedicated and passionate about making a difference in some one else's life.  Your lives. I hope that Judy will keep building, as well.  Just like a dear friend who is moving away, I  wish nothing but good things for Judy.  I hope that everyone will soon begin to understand that they do not have to take sides to care about either one of us, because in the end we all want the same thing; answers and healing.  I hope too, that before long, Judy will feel the same way. Thank you for caring, Annette

Bloggerama Day is October 9

Bloggerama Day alert! So, start thinking about what you are going to write. If you haven't got a blog then start one TODAY - it's easy and free (www.blogspot.com or www.wordpress.com)- you need to speak up about your disease. Now is not the time to run and hide. The media spotlight is on you and we will not be on the radar for long. The bloggerama theme will be what the disease is doing to you, how you are affected day to day and what your hopes for the future are. Spread the word. Publish your blogs on Sunday 9th October, which is the 2nd anniversary of when the Lombardi study, "Detection of infectious retrovirus, XMRV, in the blood cells of CFS patients" was published in Science. Join us on this page: https://www.facebook.com/event.php?eid=186504361392760

Another Bloggerama Day Cometh!

Andrea Pring
OK, I'm going to organise another bloggerama day. So, start thinking about
what you are going to write. If you haven't got a blog then start one
TODAY - it's easy and free ( _www.blogspot.com_ (http://www.blogspot.com) or
_www.wordpress.com_ (http://www.wordpress.com) )- you need to speak up about
your disease. Now is not the time to run and hide. The bloggerama theme
will be what the disease is doing to you, how you are affected day to day and
what your hopes for the future are. Spread the word.


Hopes for the future?
Well, since most of the things that have been clinical trialled seemed to
only help those sick 5 years or less, and I'm coming up on 25 years in a
few months, it appears my only hope is that they find a cure for the next
generation because it's too late for me.

"Caring for the ME Patient" - Book by Jodi Bassett/Foreword by Dr. Hyde


*please repost widely*

HFME is *very* excited to announce the publication of their first book
on M.E.!

Recently a press release for this book was posted, but this email
provides information about this book, and its contents and function, for
patients - as well as information on where to source the various
editions of this new book.

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

'Caring For The M.E. Patient' by Jodi Bassett

HFME is *very* excited to announce the publication of their first book
on M.E.!

This book provides essential information for anyone who knows, loves or
provides care for someone with M.E. - sourced from the world's leading
M.E. experts.

The book also makes an excellent primer on M.E. for the M.E. patient.

The book 'Caring For The M.E. Patient' by Jodi Bassett includes a
Foreword by one of the world's leading M.E. experts, Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated
it is near impossible to hold one's head above the water and sift
through this morass of misinformation. Any attempt to seek the truth is
always a major difficulty. Somehow, Jodi Bassett and Hummingbird have
managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and
physicians with an interest in M.E. but the bureaucrats in the USA
Centers for Disease Control who have done so much damage to the
understanding of M.E. I recommend her book to all and wish it every
best success."


From the back cover:

For friends, family and partners: Your friend or family member may be
just as ill and disabled as someone with M.S., yet have almost no
appropriate social support at all. They may also be dealing with serious
medical neglect or even overt abuse. This happens due to the deliberate,
financially and politically motivated confusion between the distinct and
measurable neurological disease M.E. and the vague fatigue-based
wastebasket diagnosis of 'CFS'.
These are two entirely different
entities. Find out what is really going on and why.

Learning the facts is not time-consuming or complicated, and may improve
both the patient's quality of life, and your relationship with them. You
can help the person in your life that has M.E. Supporting your ill
friend or family member more fully by being aware of the basic facts of
M.E. could make all the difference in the world to them. This book shows
you how.

For medical professionals: Patients with M.E. have some care needs which
are common to a variety of other diseases, and others that are unique
and with which hospital staff, doctors or carers may be wholly
unfamiliar. If you are providing care for someone with M.E., you will
find knowledge of some of the basic M.E. facts vital in order to avoid
additional unnecessary suffering and disability.

Taking a small amount of time to learn the facts about the disease can
make an enormous difference to the M.E. patient's quality of life and
prognosis. It could even be life-saving. Providing appropriate care and
support for the M.E. patient could make all the difference in the world
to them. This book shows you how.


-----

Click here to purchase this book in paperback, large print paperback or
hardcover editions or as an ePub eBook digital download from Lulu.

Lulu is a US company that ships books all around the world.*

http://www.lulu.com/spotlight/jodibassett


The ePub edition is also available on iTunes:

http://www.lulu.com/product/ebook/caring-for-the-me-patient/17154941
http://itunes.apple.com/us/book/caring-for-the-m.e.-patient/id465643322?mt=11


Click here to purchase the Kindle eBook digital download from Amazon.com.

http://www.amazon.com/Caring-M-Patient-ebook/dp/B005M94CN0/


Click here to purchase the Kindle eBook digital download from Amazon.co.uk.

http://www.amazon.co.uk/Caring-M-Patient-ebook/dp/B005M94CN0/


The paperback book will be available from Amazon.com, Amazon.co.uk and
other booksellers in the near future, most likely November - December 2011.

*Note: When ordering books from Lulu, paperback books and hardcover
books are best purchased in separate orders as the post cost becomes
significantly higher than usual when an order combines both paperback
and hardcover books. (This may possibly be due to the fact that
paperback and hardcover books are produced by different Lulu affiliated
printing companies.)

For more information on this book see:

http://www.hfme.org/hfmebooks.htm


Best wishes,
Jodi Bassett

The Hummingbirds' Foundation for M.E.
www.hfme.org

"Human progress is neither automatic nor inevitable... Every step toward
the goal of justice requires sacrifice, suffering, and struggle; the
tireless exertions and passionate concern of dedicated individuals."
Martin Luther King Jr.

4 new HFME health papers by Jodi Bassett

*please repost*

4 new HFME health papers by Jodi Bassett

------

A new paper is available: Foods to eat, foods to avoid and foods to
think about. A paper which summarises and simplifes the information
given in some of the very best books on diet, nutrition and healing, for
the benefit of time-poor patients.

http://www.hfme.org/foodstoeat.htm

------

A new paper is available: Recipes for traditional & nutrient dense foods

http://www.hfme.org/traditionalrecipes.htm

------

A new paper is available: Improving digestion and gut health in M.E.

This paper explains some of the basics of healing the gut in a very
brief and easy to read format.

http://www.hfme.org/improvingguthealth.htm

------

A new paper is available: Pure water and M.E.

It is important that M.E. patients stay well hydrated and also that they
avoid the 'nasties' such as heavy metals, chlorine, fluoride and other
chemicals that are present in standard tap water.

http://www.hfme.org/purewater.htm

------

These papers can also all be downloaded in Word or PDF format in the
'Treating M.E. - The Basics' download.

‎'Treating M.E. - The Basics' the free eBook and Word/PDF download from
HFME has been completely updated this month.

In addition to over 100 pages of new content, the book also now includes
easy to use clickable links and a document map. This makes jumping from
one paper to another so much easier than ever before and makes using the
book far more M.E. patient friendly! You can redownload this updated and
much-improved version of the paper now for free - this is highly
recommended for anyone using older versions of this book.

See: http://www.hfme.org/hfmebooks.htm#547218501

Best wishes,
Jodi

The Hummingbirds' Foundation for M.E.
www.hfme.org

"What you eat has more power over disease and aging than any other
medicine your doctor can prescribe. Food is awesomely powerful." Dr
Sherry Rogers.

Tuesday, October 4, 2011

Drs. Speight and Spence tell their history

http://www.imet.ie/imet_website/meetings_events/dublin_conference.html
(website has photos)

DUBLIN CONFERENCE

The Irish ME Trust will be holding a meeting in the Ashling Hotel
www.ashlinghotel.ie, Parkgate Street, Dublin 8, on Saturday 5th
November at 2.00pm. The speakers at this meeting will be Dr Vance
Spence and Dr Nigel Speight. The Ashling is in a central location
adjacent to Heuston Station, Dublin Zoo, Kilmainham Gaol and on the
Luas red line.  Location map at the following link -
www.ashlinghotel.ie/location

Dr Vance Spence was instrumental in the founding and launching of ME
Research UK. A graduate of the Universities ofLondon and Dundee, he
was a Principal Clinical Scientist responsible for vascular services
and research and, in 1997, he rejoined the University of Dundee
Medical School as Honorary Senior Research Fellow in the Department of
Medicine, with the objective of stimulating research into the causes
of ME.

Dr. Nigel Speight was, before his retirement, consultant paediatrician
at The University Hospital of North Durham, County Durham, and is one
of the most renowned authorities on ME and children.

The following articles comprise an interview given by Dr Nigel Speight
and a synopsis of a talk in 2010 by Dr Vance Spence.


Children and Young people with ME-
A Personal Overview of the Last 20 Years By Dr. Nigel Speight

As documented by Invest in ME at the 2007 London Conference



Introduction
Having just retired after 25 years as a Consultant Paediatrician with
a special interest in ME, I have been asked to give this personal take
on the last 20 years regarding young people with ME and the way the
medical profession has treated them.

Overall the profession has not (in my opinion) exactly covered itself
in glory in many instances.
It is possible I received an
over-pessimistic picture in that the cases coming to me from other
areas tended to be self-selected hard-luck stories. Nevertheless there
were some definite cases which in my view amounted to "Child Abuse by
professionals", and of course these were mainly due to ignorance about
or disbelief in the reality of ME on the part of otherwise well-
meaning professionals.

Fortunately there is currently a brighter picture and better
understanding and acceptance of ME in the profession. However, I was
still called in on two cases of Care Proceedings in young people with
ME in the South of England in the last 6 months of my career.



My personal story regarding ME

I was never taught anything about ME during my student training or
subsequent training in paediatrics, and became a consultant in a state
of almost total ignorance on the subject, like most of my peers. I had
a slight advantage in that two of my nephews developed the condition,
and as they had both been keen sportsmen and were desperately unhappy
at being unable to continue sport I had an instinctive reaction of
belief in ME as a genuine organic/physical illness, and a natural
scepticism for the widespread view that it was "all in the mind".

About 23 years ago I saw my first case, a 13 year old young lady who
announced her diagnosis to me. Her symptoms "rang true" to such an
extent that this experience cemented my belief system along the lines
of an organic causation. The late Alan Franklin had an almost
identical introduction to the condition at about the same time.

Subsequently I took an increased interest in the condition and cases
just seemed to gravitate to me, both locally, regionally and from all
over the UK. By the time of my retirement I had seen personally c 200
cases in North Durham, 150 in the Northern Region and another 150 from
further afield, including Northern Ireland, the Isle of Man and
Scotland. Many of the cases who came from further afield did so
because of failure to obtain an official diagnosis of ME which had led
the family to feel threatened in a number of different ways, the worst
being threats of Care Proceedings, fines for non-school attendance,
and threatened withdrawal of benefits (or failure to be granted
benefits in the first place).



The controversy as to the nature of ME

Seeing young people develop ME out of the blue in the absence of any
psychological trigger made me question the widely held belief that ME
is a "psychosomatic" disease.
I felt as if I was the little boy who remarked that the Emperor's new
clothes were non-existent.
Accordingly I sent a questionnaire to all
consultant Paediatricians in the Northern Region, sometime in the mid
1980s.
I was heartened by the response, in that a clear majority (19 versus
7, with about 10 don't knows) shared my belief that ME was primarily a
physical illness which can affect people who are at least initially
psychologically normal. Most of these doctors were general
paediatricians. When I repeated the exercise with Child Psychiatrists,
they almost universally refused to tick any of the boxes on offer but
instead deplored the question and gave me lectures on the mind-body
continuum!

Basically, this was a reflection on how Psychiatry has been allowed to
dominate the field of ME for the 30 years since 1970, when
psychiatrists McEvedy and Beard first alleged that Royal Free Disease
had all probably been a manifestation of mass hysteria in nurses.
(They did not actually see any of the cases but just constructed their
hypothesis from a review of the
notes) The discipline of Adult Medicine seemed only too happy to
abdicate the field to psychiatry, possibly because with increasing
specialisation there wasn't an "ology" that would own ME. (eg
Neurology, Immunology, Rheumatology, Microbiology etc,
although in
each of these specialties there were individuals who took an interest)

I continued to attempt to fly the organic flag. For instance I
demanded the right of reply at the annual paediatric conference in
Cambridge after a prominent Child Psychiatrist had been invited the
year before. Addressing an audience of c 80 paediatricians I won a
majority vote on a show of hands at the end of my lecture. Agreeing to
see cases from outside my own area was a further very effective way of
highlighting the continuing controversy.



My general approach to young people with ME

The first person to influence me was Dr Betty Dowsett who was invited
by one of our local GPs who believed in ME to give a lecture in our
hospital. She gave such a clear exposition of the clinical features
that she made the condition both "real" and respectable for me, and I
felt empowered to make the diagnosis myself in future. Subsequently I
heard both Dr Alan Franklin and Dr David Bell talk on the same
occasion in Newcastle and this increased my confidence in
understanding the condition. I remember that Dr Franklin said we are
training younger doctors to be too dependent on performing tests on
patients and losing the clinical skill of history taking as a result.
I rapidly realised that ME sufferers want above all for their
condition to be accepted by their doctor and their symptoms validated.
They are enormously grateful for this and very forgiving of our
failure to cure them.
They then wish their doctor to remain engaged
with them and their condition, and not to be discouraged by the
failure of the patient to recover. Too often doctors reject patients
with ME on the grounds that there is "nothing they can do for them".
Even this is preferable to the "one way ticket to the psychiatrist
approach" which is again understandably perceived as a form of
rejection by the patient. This need for validation was brought home to
me by my seeing a young teenage girl in a wheelchair sobbing her eyes
out at a meeting for young people. I asked her mother what was the
matter and who had upset her, only for her to reply "Its all right,
those are tears of joy - she has just heard a lecture by Dr David Bell
after which she said "thank goodness there is one doctor in the
universe who understands what I have been suffering from these last
three years" "!

Another telling anecdote is that of a highly intelligent 6yr old girl with ME whose paediatrician allegedly told her "There can't be anything wrong with you because all your tests are normal" (How many times have the ME community heard something to this effect?) The girl replied with perfect logic and even better grammar "Maybe I've got a condition for which you have not yet invented the right test"!



The challenge of the Very Severe Case

My first very severe case took me by surprise and I made big mistakes
in her management. I had already diagnosed her while she was still in
the moderate range of severity only for her to deteriorate suddenly
following a further viral infection. In retrospect I realise that I
was more concerned for my own position than her welfare, in case I had
missed some other more treatable diagnosis. (This is an almost
universal fear in doctors confronted with ME) I accordingly referred
her to tertiary specialists for second and third opinions, and she was
subjected to numerous upsetting tests and examinations over a three
day period in hospital. This so traumatised her that she had
difficulty forgiving both me and her parents over the next three
years, and this may well have delayed her recovery. Subsequently every
fresh professional whom I introduced to her care managed to upset her
further, giving me grounds for being very sceptical of the orthodox
teaching of the virtues of a multidisciplinary approach!

Things were further set back when the GP insisted on calling a meeting
where the Health Visitor wondered out loud if perhaps the father was
sexually abusing his daughter; minutes were sent to the family in a
spirit of openness! (Not surprisingly the family changed their GP
practice after this
episode) Fortunately she eventually made a good recovery despite having been
bed- ridden and tube-fed for 3 years. My next case was almost exactly
similar but I handled her according to my new convictions. I strictly
limited her from too much contact with other professionals,
simply sharing her care with her GP, our home nursing service and our
dietician (to supervise her tube-feeding) This second case did much
better emotionally, and made a total recovery within 2 years.

I did not involve Child Psychiatry, Physiotherapy, Occupational
Therapy or any other disciplines and she did not appear to suffer from
their absence, making a total recovery in 2 years after 9 months of
tube-feeding. In my experience of cases in the rest of the country,
this scenario of the paediatrician being panicked by meeting a very
severe case is really quite common and has contributed to some of the
cases referred to Social Services.



Child Protection Cases
Every one of these was a nightmare for the young person and the family
and in my view added insult to injury for young people deserving
sympathy and support but getting the opposite. I was involved in over
20 of these cases, all of which reached the stage of a Child Protection
Case Conference. There was usually a combination of one or several of
the following factors operating to lead to a Child Protection
approach:

Single mother.
A disbelieving and usually absent father.
Other frustrating medical problems eg allergies.
A record of the family having put pressure on doctors in the past eg
for second opinions.
A lack of an official diagnosis of ME.
Another family member suffering from ME, often "unofficially".
Severity of the ME, deterioration or failure to respond to some form
of medical regime.
A reluctance on the part of the family to be referred to Child
Psychiatry, especially if it involved admission to a unit and
restriction of parental access.
A tendency for the case to be driven by doctors who had never actually
been clinically responsible for the young person, who had not
therefore taken a history and were thereby prone to disbelief (usually
Community Paediatricians, often concerned about poor school
attendance).
A failure of doctors and/or Social Workers to actually talk to the young person.
A belief on the part of doctors in the efficacy of their "treatments",
leading to the mother or young person being blamed for the failure to
respond.
A frequent tendency to invoke the spectre of Munchausen Syndrome by
Proxy (MSBP, aka Factitious and Induced Illness) whereby the mother is
alleged to be inventing/exaggerating her child's symptoms for some
perverse motive of her own.
A distressing sense of self-righteousness on the part of the
professionals involved and a reluctance to open their minds to the
possibility they were perpetrating a grave injustice. The term "group
folly" sprang to mind as each professional sheltered in the security
of the group decision, scared to break ranks.

In this last respect Chris Clark (Former CEO of AfME) said to me after
hearing some of these stories "It actually smacks of sadism". The good
news is that in every case bar one I was able to reverse the Child
Protection juggernaut by my report for court. In addition to making an
official diagnosis of ME, I spoke to the young person on his/her own,
was often able to assert that the young person was "Gillick competent"
and did not consent to be taken into care.

I would love to say that we have seen the last of this sort of case
but fear we have not.





Dr. Nigel Speight was, before his retirement, consultant paediatrician
at The University Hospital of North Durham, County Durham, and is one
of the most renowned authorities on ME and children.








Dr Vance Spence was instrumental in the founding and launching of ME
Research UK. A graduate of the Universities of London and Dundee, he
was a Principal Clinical Scientist responsible for vascular services
and research and, in 1997, he rejoined the University of Dundee
Medical School as Honorary Senior Research Fellow in the Department of
Medicine, with the objective of stimulating research into the causes
of ME.





Sheffield ME Group Talk by Dr Vance Spence October 2010

Biomedical research in ME/CFS: Today and Tomorrow

Vance explained that he had been ill for almost 30 years with an
illness which people call "ME" or "CFS", but without appropriate tests
who could tell? He realised there was a burning need for biomedical
research, hence the charity ME Research UK (website
www.meresearch.org.uk) of which he is Chairman, and which celebrates
its 10th anniversary this year. Dr Spence reminded the audience that
he was not a medical practitioner but a clinical scientist; before
contracting ME, he was a Principal Clinical Scientist in Vascular
Disease and Director of Vascular Research at the University of Dundee.
He explained how the charity operates and how it fulfils its main role
- of commissioning and funding scientific (biomedical) investigation
into the causes, consequences and treatment of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In the past
decade, the charity has grown in size and respect, punching above its
weight in a variety of spheres. For instance, it has funded 29
specific investigations, most in the past six years in Britain and
abroad - that's more specific research projects on ME/CFS than any
other single organisation in the world outside the American continent. 

Diagnosis

Vance spent a long time discussing ME, "CFS", fatigue and the
complexity of diagnosis nowadays. He described how patients today are
diagnosed with ME/CFS - a diagnostic mess in a variety of ways.
Originally, the label Myalgic Encephalomyelitis (ME) was used for an
illness that had been found to occur in epidemic and sporadic forms,
believed to be caused by a continuing or persisting viral infection.
Its characteristics were a profound, generalised post-exertional loss
of muscle power (fatigability); muscle pain that could include
tenderness and swelling; neurological signs; and a proneness to
relapses, which could take the form of recurrences of the original
systemic illness. But, as there was no specific diagnostic test for ME,
and since post-exercise "fatigue" was one of its prominent symptoms,
people with ME began in the 1990s to be diagnosed with "Chronic
Fatigue Syndrome" (CFS), or the compromise diagnosis ME/CFS, which is
based on a collection of vague non-specific symptoms (fatigue, sleep
disturbance, sore throat etc) shared with other illnesses.

The "F" word

So what do the people today diagnosed with ME/CFS actually have wrong
with them? A good question, and at least 2 studies have tried to tease
this out.
First, some people with a diagnosis of ME/CFS when examined at the
University of Dundee were found to have other organic illnesses (e.g.
muscle, connective tissue,endocrine disorders 21%), while 12% had a
potentially treatable psychiatric disorder that could account for their
symptoms, and 7% had fibromyalgia. In the second, 44% of ME/CFS
patients in Newcastle were found to have other diagnoses, e.g., sleep
apnoea or depression and anxiety, to account for their symptoms.

So, it seems that around 40% of patients given a diagnosis of ME/CFS
might, in fact, have other things wrong with them
. So, the key is for
people to get a thorough medical examination initially to exclude
other more treatable conditions, and only then to be given a diagnosis
of ME/CFS.

Funding crisis

ME/CFS Biomedical Research: Quo Vadis?

Vance mentioned that while these diagnostic problems caused problems
for clinicians like GPs, they also complicated research studies
because volunteers had to be screened and categorised by medical
examination before they could be enrolled into studies - raising the
costs of medical research
substantially.     And  he explained that the funding available for ME/CFS
research was small; for instance, Cancer Research UK's income 2008/9 was
£498,221,000, compared with ME Research UK's income of £264,862 for
the same period.

Biomedical research that patients want to see is not happening. As
most research funding for many, if not all, illnesses comes from
charitable sources, i.e. directly or indirectly from public donations,
we have to beef up our efforts, increasing funding by a factor of 10
to 100, and attracting new blood and fresh ideas into the field. Only
then can we being to see a large number of research groups undertaking
the large number of studies we all want to see, attracting new blood
and fresh ideas into the field of ME/CFS research, as the slide
suggests.

Research projects

He then went on to describe some ongoing research that ME Research UK is
funding:

a) Studies at the University of Dundee

(i) Inflammation and apoptosis - children and adults

With funding from ME Research UK, researchers at the Vascular and
Inflammatory Diseases Research Unit, University of Dundee, have
uncovered a range of potentially important cardiovascular findings in
ME/CFS patients, including increased oxidative stress (these toxic
molecules can, amongst other things, damage blood vessels), abnormal
metabolism of acetylcholine (an important neurotransmitter and dilator
of blood vessels), and increased early death of white blood cells
(which may indicate active inflammation).
All this has provided accumulating evidence of a compromised
cardiovascular system in patients with ME/CFS, and of the potential
importance of inflammation in this disease process. And the most
recent finding - of similar abnormalities in children with ME/CFS -
also points in this direction.

In 2010, Dr Gwen Kennedy and her colleagues in University of Dundee have
published results on children with ME/CFS,     to see whether the
abnormalities found in adult patients are also present in children
with ME/CFS. But another aim was to investigate objectively the quality
of life of children with ME/CFS. Her main finding of the study (funded
by ME Research UK, the Tymes Trust, and Search ME) was that children
with  ME/CFS scored significantly lower than the healthy children in
10 out of 14 areas covered by the Child Health Questionnaire. They had
particularly low scores for global health (21.4 compared with 84.1 in
the healthy children) and for social limitations due to physical
health (24.9 compared with 100).
Self-esteem, mental health, body pain and discomfort, and the effect
of the child's health on family activities were  also significantly
worse for children with ME/CFS. However, there were no differences
between children with ME/CFS and healthy children in how well the
family got along, or in the children's perception of their own
behaviour. Importantly, the illness had started with an infection in
88% of the children, which confirms the known association between
initial infection and subsequent development of illness.
Also, a significant proportion of children in the study had
interrupted schooling, and only 1 of 25 children was able to attend
school full-time, a finding which accords with other studies on the
interruption of education in children with ME/CFS. Fortunately, just
over half of the children who participated felt that their symptoms
were improving, and the prognosis for children with ME/CFS is
generally thought to be better than for adults, although no long-term
studies have been conducted. Overall, Dr Kennedy's findings confirm
that ME/CFS does have a serious impact on children's quality of life,
and she comments: "This experience of illness occurs at a particularly
vulnerable time of life when disruption to education and family has the
severest consequences... it is important that the condition be
recognised and diagnosed so that the consequences on quality of life
can be attenuated."

"We believe that the data presented herein are consistent with the
finding that many patients with CFS/ME have an underlying detectable
abnormality in the behavior of their immune cells consistent with an
activated inflammatory process...."

Coming to the biochemical measurements, compared with healthy control
children, the young people with ME/CFS had:

1.Higher levels of oxidative stress, manifested as elevated levels of
isoprostanes

2.Reduced levels of vitamins C and E

3.A greater percentage of white blood cells undergoing apoptosis.

The   increased  apoptosis  (or programmed cell death) may be caused by a
number of factors, including a persistent viral infection or toxic
agent, or an abnormal immunological response. This finding is
particularly intriguing given that many patients, including most
children in this study, report that their disease started following a
viral infection of some kind. At present, however, there is
insufficient evidence to make a causal link between infection and
increased apoptosis, though the finding is tantalising.

(ii) Arterial stiffness

Coming to adults with ME/CFS, Dr Faisel Khan in Dundee found that
patients with ME/CFS had significantly stiffer arteries than healthy,
age-matched control subjects, and they also had higher levels of C-
reactive protein, indicating significant inflammation and oxidative
stress. Furthermore, there was evidence of a relationship between
arterial stiffness, and inflammation and oxidation. The cause of
increased arterial stiffness in ME/CFS is still unknown. While
lifestyle characteristics such as smoking, obesity and physical
fitness also play a role in its development, the patients in this
study were no different from the control subjects in this regard. Dr
Khan is, however, careful to emphasise that this is an association
only and that the current results do not prove cause and effect.

Do these results mean that people with ME/CFS are at an increased risk
of developing cardiovascular problems such as heart disease? At the
moment, no-one knows
but the work does raise the possibility that
suppressing inflammation in carefully selected patients may lead to an
improvement in arterial stiffness and a reduction in long-term
cardiovascular problems, something already achieved in patients with
rheumatoid arthritis using the anti-TNFα drug, etanercept. Clinical
trials are unfortunately very expensive so conducting a similar trial
on ME/CFS patients would need the sort of investment that only
pharmaceutical companies can deliver. However, further research is
needed before this can be answered definitively.

b) Studies at the University of Newcastle

(i) Autonomic nervous system (ANS), including heart

The autonomic nervous system (ANS) controls cardiovascular, digestive
and respiratory functions, and has a range of other important roles.
When it goes wrong, the consequences can be severe. Since one of the
key difficulties that ME/CFS patients face is standing, most
especially standing still, without experiencing symptoms such as
dizziness, altered vision, nausea, fatigue etc, the possibility exists
that there could be a problem with the autonomic nervous system.
Professor Julia Newton of the School of Clinical Medical Sciences,
University of Newcastle, has been looking at the ANS in ME/CFS
patients since 2006 with funding from ME Research UK. Vance mentioned
that Julia Newton gets her patients from the NHS CFS clinic in
Newcastle, and that it might be possible for some people to obtain a
referral there, though of course all referrals must come via a GP,
since they are the front line access points to secondary care.

In a series of fascinating scientific papers, Prof Newton and colleagues
have  shown that     autonomic dysfunction is present in three-quarters of
the patients - a most unexpected finding. Furthermore, she has also
shown that a simple-to-measure assessment of the heart rate response
to standing was abnormal in nearly 90% of patients
. Because of this,
MERUK has given its largest ever research award of £130,000 to
Professor Newton for a two-year study of autonomic nervous system
(ANS) dysfunction at the University of Newcastle, funding provided in
conjunction with the John Richardson Research Group and the Irish ME
Trust. Vance described how this award was intended to extend and
explore some of the mechanisms behind these autonomic problems in
ME/CFS patients.

In separate studies, Prof Newton is also looking at ways patients can
deal with the symptoms of ANS dysfunction, and there are some drugs
available, as well as non-drug methods, such as tilt-training! After
initial training, patients at home (with another person there for
safety) lean against a wall with their feet 15 cm away, increasing the
length of time to 30 minutes over days to weeks (evidence suggests
that such once-daily tilt training can be effective in preventing the
recurrence of fainting).

Autonomic dysfunction in ME/CFS

Newton JL et al. Symptoms of autonomic dysfunction in CFS.

The autonomic nervous system also plays a part in regulating events in the
exercising muscle, however, and the Prof     Newton    and   colleagues
hypothesised that might be involved in the exercise-induced symptoms
so characteristic of ME/CFS. To examine this, they enlisted the help
of phosphorus magnetic resonance spectroscopy (MRS), a marvellous tool
which allows assessment of acid (pH) handling inside the muscle where
the problems might lie. The results published in Journal of Internal
Medicine (2010) show significant impairment of proton excretion in
recovery phase following exercise - in simple terms, ME/CFS patients
recovered substantially more slowly compared with controls
. Could
simple deconditioning be the cause?
Probably not since both maximum voluntary contraction measurements and
muscle volume were similar in patients and in the sedentary controls.
Rather, the researchers think it more likely that impaired acid
handing could be one of the mechanisms through which autonomic
abnormalities act to produce post-exercise symptoms and fatigue, given
the role played by the autonomic nervous system in regulation of
acid transporter pathways and vascular flow in muscle.

Despite the key role of post-exercise symptoms in the illness, there
has actually been very little scientific investigation into muscle
physiology during exercise in ME/CFS - a fact that makes these novel
findings so important.
Based on these results, ME Research UK has now
actioned funding for the next step, and examination of the function of
an energy-generating enzyme which might be under- performing in people
with ME/CFS.

Researcher Fired Amidst New Controversy

http://news.sciencemag.org/scienceinsider/2011/10/xmrv-researcher-fired.html

Chronic Fatigue Syndrome Researcher Fired Amidst New Controversy
by Jon Cohen on 4 October 2011, 6:19 PM

Judy Mikovits has had a rough few weeks. On 22 September, Science
published online a nine-lab study widely seen as the final blow to the
theory, championed by Mikovits and colleagues in an October 2009
Science paper, that a recently detected mouse retrovirus might play a
causal role in chronic fatigue syndrome (CFS). A letter in the same
issue of Science from one of the contributing labs to the 2009 report
revealed that a contamination had marred its contribution—PCR
detection and sequencing of the mouse virus, dubbed XMRV. Mikovits and
colleagues defended the validity of the rest of the study, known as
Lombardi et al., which detected the virus by several other methods, so
Science issued a rare partial retraction of the original paper.

Then on 29 September, Mikovits was fired from her job as research
director of the Whittemore Peterson Institute for Neuro-Immune Disease
(WPI), a private organization in Reno, Nevada, devoted to CFS research
and treatment. Both Mikovits and WPI's CEO, Annette Whittemore, say
the firing was not related to the XMRV theory's demise.

The very next day, a graduate student who writes a snarky blog that
has been highly critical of Mikovits and the XMRV theory raised
questions about whether a figure in Lombardi et al. had been
misrepresented. Science Executive Editor Monica Bradford said in a
statement that the journal is investigating the allegation. "As is our
policy in cases of alleged figure manipulation, we follow up with the
research authors as soon as our own review of the allegation is
complete," said Bradford. "Science takes all such matters seriously
and seeks to respond thoroughly and efficiently."

The furor revolves around an image—the bottom half of Figure 2C in
Lombardi et al.—that shows XMRV proteins in CFS patients but not
healthy controls. In her blog known as ERV (endogenous retroviruses),
Abbie Smith on 30 September noted the striking similarities between
Figure 2C and a slide Mikovits presented at a CFS meeting in Ottawa,
Canada, on 23 September. Smith, who is working on her doctoral
dissertation at the University of Oklahoma, Oklahoma City, and studies
HIV, wrote that an anonymous tipster had pointed out to her that the
two images looked identical but had different patient numbers and
experimental conditions. Smith questioned whether this was a simple
mistake or an attempt to recycle old data to make a new argument.

The Ottawa slide supported Mikovits's contention that even if XMRV
could not be detected in CFS patients, other gammaretroviruses still
lurked in their chromosomes. Mikovits described how she had treated
cells from two CFS patients with a chemical, 5-Azacytidine, that takes
methyl groups off DNA. This procedure prods cells that harbor latent
versions of retroviruses to produce them, and the image on the slide
showed the resultant proteins in what's known as a Western blot gel.
In Lombardi et al. what appears to be the same image shows "XMRV
proteins" and makes no mention of 5-Azacytidine use.

Mikovits's collaborator, Francis Ruscetti of the National Cancer
Institute (NCI) in Frederick, Maryland, who ran all of the Western
blots, confirms that the Ottawa slide uses the same image that appears
in Lombardi et al. Ruscetti and Mikovits, in a joint e-mail to Science
for this article, said many patients and their doctor, Daniel Peterson
(who since has had a falling out with WPI), knew the original coded
numbers, so the researchers changed them for the Science publication
to "protect the patient privacy." Ruscetti says it was a mistake for
Mikovits to have used the original patient codes in Ottawa. "We were
under so much pressure, we missed it," says Ruscetti.

As far as the use of 5-Azacytidine, Ruscetti and Mikovits stressed in
their e-mail that "there was no attempt in the original paper to hide
anything." They say for the purposes of Lombardi et al., the use of
5-Azacytidine was not germane: They were simply trying to demonstrate
that CFS patients had viral proteins not seen in controls. By the time
of the Ottawa meeting, they say they realized that this experiment did
not in fact show XMRV but proteins from a broader family of
gammaretroviruses.

After Lombardi et al. appeared, several laboratories had reported that
they could not detect XMRV in CFS patients. But Ruscetti and Mikovits
note that most of these studies relied on polymerase chain reaction,
which used DNA sequences of XMRV to fish out pieces of the virus from
blood samples. Those tests, they point out, would have missed other
gammaretroviruses with different sequences. The Western blot assay
they used in Lombardi et al. just so happened to cast a wider net that
uncovered proteins from any member of the gammaretrovirus family. In
addition, they say, the use of 5-Azacytidine made clear that these
infections would be missed in routine assays, as these viruses often
exist in a latent state.

On the ERV blog, Smith and others also argued that the study lacked
proper controls: the healthy controls in this experiment did not have
5-Azacytidine added to their samples. "My [principal investigator]
would say 'Why did you run this gel?' if I handed it to him," wrote
Smith.

Vinay Pathak, a retrovirologist at NCI who earlier damaged the
XMRV/CFS theory with a study in published in Science that documented
how the virus was accidentally created in laboratory experiments, says
he is "bewildered" by Ruscetti's and Mikovits's explanations about
Figure 2C. "If [5-Azacytidine] was used in the original experiment,
it's an egregious error to leave it out of the Science paper," says
Pathak. "It makes a difference how I would interpret the results."

Jonathan Stoye, a retrovirologist who once supported the XMRV/CFS
hypothesis but subsequently changed his mind after his own studies
failed to replicate the finding, says its time to retract Lombardi et
al. in its entirety. "I think there's a point where Science has to
say, there is no substance to this paper," says Stoye. "It was
published with a message, and that message is gone."

Neither Lombardi et al. nor the questions about the slides were
mentioned in Whittemore's 30 September letter formally terminating
Mikovits's contract, sent the day after the two had a heated phone
conversation. In that letter Whittemore charged her high-profile
researcher with being "insubordinate and insolent." Mikovits was
immediately locked out of her lab.

Three letters between Whittemore and Mikovits say the firing hinged on
Mikovits's failure to pass on a cell line that was sent to Vincent
Lombardi, the first author of the October 2009 Science paper who runs
UNEVX (formerly known as VIPDx), a diagnostic laboratory owned by WPI.
Until recently, the lab sold a test for XMRV and related viruses.

In a 1 October written response to Whittemore, Mikovits contended that
it was "completely appropriate" for her, as research director, not to
give Lombardi the cell line. The cell line was not related to studies
of the gammaretroviruses, but Lombardi wanted to use it for
experiments connected to a grant Mikovits had secured from the U.S.
National Institutes of Health to study possible causes of CFS.
Mikovits contended that Lombardi "was unwilling to take my direction"
and should not be undertaking a new project "while neglecting his
other duties." She also questioned his ability to carry out that
experiment.

Annette Whittemore issued a statement to Science in which she strongly
defended Lombardi's performance. "Dr. Lombardi is a valued and
important part of our team, and conducts his research work
accordingly," wrote Whittemore. "While personnel matters are generally
confidential, the statements made by Judy Mikovits are wrong, without
merit and those of a disgruntled former employee."

In an interview with Science, Mikovits contended that her firing was
also linked to a longstanding battle about WPI's decision to sell,
through VIPDx/UNEVX, a test for human gammaretroviruses. The lab began
offering the tests, which cost around $500, shortly after Lombardi et
al. reported a link between XMRV and CFS. Some patients who tested
positive went on to take antiretroviral drugs. "I said, 'No, no, no,
no,' " says Mikovits of the test. "I've asked them for the better part
of 2 years to show me that what we got in Lombardi et al. is the same
thing they're selling to patients."

The issue came to a head with the recent publication by Science of the
nine-lab study. The so-called Blood Working Group, which included the
labs run by Mikovits and Ruscetti, failed to reliably find XMRV or
other gammaretroviruses in blinded samples from people who previously
had tested positive for these viruses. Both Mikovits and Ruscetti
co-authored the paper, which invalidated their own assays for XMRV.
WPI says UNEVX has stopped offering the diagnostic tests, but did not
give details about the timing or reasons.

Whittemore, who refers to CFS as myalgic encephalomyelitis (ME)—a
common name for CFS in Europe—stressed that the institute remains
devoted to studying human gammaretroviruses in "ME and related
diseases" and that no one there "would ever put self interest ahead of
research or finding the causes of ME."

Mikovits, who says she currently does not even have access to her
laboratory notebooks, is looking for another institution to continue
her work.


With reporting by Martin Enserink

X Rx: No Good Deed Goes Unpunished

 
More on WPI upheaval from Dr. Jamie, with comments
 
Comment from pat fero:

THinking about the larger picture: IF we had funding, FUNDING FOR SPECIFIC CFS biological studies and not the junk funding from NIH which may be wonderful within another context, would we be in this spot. WE NEED MILLIONS of dollars so researchers, like everyone else in this economy do not have to compete, squabble and grovel for 150,000 here and there.
NIH is the problem CDC is the problem. These splits and wrangling over intellectual property happen everyday, but we only know about this one because the WPI and ALL the people concerned stepped out of the box. NIH FUNDING BIAS IS THE TOP ISSUE.

Bad CFS Joke

Got this from a friend who wishes to remain anonymous:
 
Why can't they hold a telethon to raise money for CFS?
 
Because they can't stay awake long enough to answer the phone!
 

Monday, October 3, 2011

National Disability Employment Awareness Month

October is officially known as National Disability Employment Awareness Month (NDEAM). This year's NDEAM theme is "profit by investing in workers with disabilities". Take a look at Think Beyond The Label's new Hire Gauge tool and see how much profit your business could make by providing employment opportunities to workers with disabilities.
 
 

What we OFFICIALLY know about Dr. Judy

Scientist Who Led XMRV Research Team Let Go
By Amy Dockser Marcus

Judy A. Mikovits, the embattled scientist who led the research team
that found a possible link between the retrovirus XMRV and patients
with chronic fatigue syndrome, has been terminated from her job as
director of research at the Whittemore Peterson Institute for
Neuro-Immune Disease in Reno, Nev.

The controversial finding, published in a 2009 Science paper, excited
patients and researchers who have long been searching for a cause for
chronic fatigue syndrome, which has an array of debilitating symptoms
that include cognitive difficulties, severe pain, and overwhelming
fatigue. On Sept. 22, the authors of the paper, including Mikovits,
published a partial retraction of the findings in Science, after two
of the 13 study authors found contamination in blood samples from
patients.
A week later, Mikovits was fired, she told Health Blog.

In a letter from Whittemore Peterson President Annette Whittemore to
Mikovits, which was reviewed by Health Blog, Mikovits was terminated
after refusing Whittemore's direct request that cell lines be turned
over to another scientist at the institute who wanted to do research
on them.

In a letter of response, Mikovits said that the cells were for use in
a specific NIH-funded project and that it would be inappropriate to
use them for another purpose without her knowledge and consent.
Mikovits is a principal investigator on an ongoing NIH-funded study
that will test CFS patients and healthy controls for XMRV or related
viruses, and she said that she plans to take her grant with her to a
new institution where she wants to continue her work on CFS.

But like many things in the long-running XMRV saga, this may not be
simple. Institutions must agree to relinquish grants, and at this
writing, it was not clear that the Whittemore-Peterson institute is
willing to let the XMRV project go.


http://blogs.wsj.com/health/2011/10/03/scientist-who-led-xmrv-research-team-let-go/
 
* * *
 
There is scuttlebutt out there, which I will not repeat without confirmation.  This is all I officially know, and when I have more official info, you'll read it here.
 


 

Gene Expression Alteration Following Exercise in CFS/FMS

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC
Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome.
J Intern Med. 2011 May 26;
Abstract.? Light AR, Bateman L, Jo D, Hughen RW, VanHaitsma TA, White AT, Light KC (University of Utah, Salt Lake City, UT, USA). Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med 2011; doi: 10.1111/j.1365-2796.2011.02405.x. Objectives.? To determine mRNA expression differences in genes involved in signalling and modulating sensory fatigue, and muscle pain in patients with chronic fatigue syndrome (CFS) and fibromyalgia syndrome (FM) at baseline, and following moderate exercise. Design.? Forty-eight patients with CFS only, or CFS with comorbid FM, 18 patients with FM that did not meet criteria for CFS, and 49 healthy controls underwent moderate exercise (25?min at 70% maximum age-predicted heart rate). Visual-analogue measures of fatigue and pain were taken before, during and after exercise. Blood samples were taken before and 0.5, 8, 24 and 48?h after exercise. Leucocytes were immediately isolated from blood, number coded for blind processing and analyses and flash frozen. Using real-time, quantitative PCR, the amount of mRNA for 13 genes (relative to control genes) involved in sensory, adrenergic and immune functions was compared between groups at baseline and following exercise. Changes in amounts of mRNA were correlated with behavioural measures and functional clinical assessments. Results.? No gene expression changes occurred following exercise in controls. In 71% of patients with CFS, moderate exercise increased most sensory and adrenergic receptor's and one cytokine gene's transcription for 48?h. These postexercise increases correlated with behavioural measures of fatigue and pain. In contrast, for the other 29% of patients with CFS, adrenergic ?-2A receptor's transcription was decreased at all time-points after exercise; other genes were not altered. History of orthostatic intolerance was significantly more common in the ?-2A decrease subgroup. FM-only patients showed no postexercise alterations in gene expression, but their pre-exercise baseline mRNA for two sensory ion channels and one cytokine were significantly higher than controls. Conclusions.? At least two subgroups of patients with CFS can be identified by gene expression changes following exercise. The larger subgroup showed increases in mRNA for sensory and adrenergic receptors and a cytokine. The smaller subgroup contained most of the patients with CFS with orthostatic intolerance, showed no postexercise increases in any gene and was defined by decreases in mRNA for ?-2A. FM-only patients can be identified by baseline increases in three genes. Postexercise increases for four genes meet published criteria as an objective biomarker for CFS and could be useful in guiding treatment selection for different subgroups.

Doctors, listen to your patients - CNN.com

 
"There are clearly two very different ways of being a 21st-century physician in nations with advanced health care: In the first way, call it the old way, the patient's story (the history) is critically listened to and examined, because the diagnosis often lurks in that simple step. After that, the physical exam begins: here the actual body becomes the text, a text that is changing and must be frequently re-examined and read by the time-honored methods of inspection, palpation, percussion and auscultation (listening with a stethoscope).
 
"The other way of being a physician tends to pay less attention to the living patient — indeed, the patient can almost seem like a distraction, because it is the "iPatient", (the term I coined for the virtual construct of the patient in the computer) that is being treated and examined."
 
* * *
This is the problem with CFS/fibro -- instead of listening to the patient, the doctor becomes blinded by "all tests are normal".  He doesn't consider that maybe he hasn't yet done the right tests.  The tests are normal, therefore the patient must be lying.
 
After being called a liar by multiple doctors, it's no wonder we patients give up on the medical profession and go home to do our own voodoo with alternative practitioners (who listen) or stuff from the health food store.

Check out X Rx: Square One

 
Steel yourself before reading.  Read the comments for further explication, including Liz Willow's.
 
Remind yourself, we are now on the radar, which we weren't two years ago.

Sunday, October 2, 2011

Ask Dr. K

Dr. Anthony Komaroff, one of the most esteemed CFS experts, has a new
general health column for Harvard Health Publications.
http://www.askdoctork.com/

My mission for the Ask Doctor K newspaper column
www.askdoctork.com
The doctor behind Ask Doctor K is Anthony Komaroff, M.D., a practicing
physician in Internal Medicine, Professor of Medicine at Harvard Medical
School, and Editor in Chief of Harvard Health Publications