Saturday, October 9, 2010
Another secret file on ME/CFS comes to light
Margaret Williams 8th October 2010 *
It is notable that two of the funders of the UK PACE Trial on "CFS/ME" (the
MRC and the DWP) have separate secret files on ME/CFS held at the UK
Firstly, the MRC files (Item reference FD 23/4553/1) containing records and
covering the period 1988-1997, which are closed for 73 years (ie.until
And secondly, the DWP files (Piece reference BN 141/1) which have only
recently come to light. and refer to "Medical Policy" on ME/CFS, covering
the period from 1984 to 1993. They are closed for 78 years (ie. until
It is also worth recalling that members of the CMO's Working Group were
threatened with having to sign the Official Secrets Act and in June 2000
were issued with a warning that even if not covered by the Act, the status
of other documents referring to ME/CFS was "RESTRICTED", a classification
that relates to "sensitive issues" and which, if disclosed, might carry a
severe penalty. The notification further stated: "Papers not so marked are
nevertheless considered confidential....The presumption is that such papers
would in due course be made available to the public...but that the timing
and means of release should be controlled by the authors...or by the
secretariat, as appropriate".
That the Official Secrets Act might have been invoked was confirmed by the
Parliamentary Under Secretary of State at the Department of Health, Lord
Hunt of Kings Heath, in a letter dated 23rd October 2000 and it is notable
that the reasons he gave for protecting information relating to the work of
the CMO's Working Group on ME/CFS were that it may be: "confidential
information obtained by a Crown servant from a foreign state or
international organisation" and "information in the possession of a Crown
servant the disclosure of which would impede a criminal process".
The question arises, are there any other illnesses where information is
classified for such a long period - the customary period being 30 years, not
78 years? For example, it is known that papers relating to multiple
sclerosis are locked away for only 30 years.
What is so secret about ME/CFS that both the MRC and the DWP feel the need
to lock away documents relating to this illness?
Further information: http://tinyurl.com/32fczyu
* * *
Friday, October 8, 2010
By Llewellyn King
Published October 8, 2010 – 1:58 pm
I've been walking on the sad side. My mailbox is jammed with dozens of
heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS);
a terrible disease that is little understood, little researched and
hard to diagnose.
Chronic Fatigue Syndrome, which is known as Myalgic Encephalomyelitis
in many parts of the world, mostly strikes people in their thirties
and forties. The disease begins with flu-like symptoms which are often
a precursor to a full collapse, often after exercise.
The disease largely disables the immune system; and leads to joint and
muscle pain, cognitive dissonance, memory loss, dysphasia and problems
with simple math. Sufferers are often confined to bed for months,
functioning at a substantially reduced capacity, where the simplest
tasks become monumental.
CFS-afflicted authors describe taking years to finish projects that
should have taken months. These include Hillary Johnson, whose book
"Osler's Web" is about CFS; Laura Hillenbrand, who wrote the
bestseller "Sea Biscuit" while struggling with the disease; and
Deborah Waroff, who is writing a book about the Jewish hero Sholom
Schwartzbard, but who has found the task dragging on for years,
working as she can between severe periods of disability, confined to
The human suffering of both the afflicted and those close to them is
incalculable in its awful impact. One woman who e-mailed me wrote:
"When I became totally disabled seven years ago, because I had not
announced my illness previously, nearly everyone I knew figured the
illness was in my head. They were aided and abetted with this sort of
reasoning based on how the majority of the medical establishment and
media had treated CFS. Like many with CFS, I lost all of my companions
and my spouse."
One of the most hopeful of recent discoveries is also generating a
collateral fear. The retrovirus XMRV has been found to be present in
CFS patients and has led them to worry about transmitting the disease
to family members. One woman who e-mailed me from Britain wrote that
her husband contracted the disease after years of nursing her. Who,
she asked, will look after them now?
A sufferer in Maryland wrote to me that she worries about her family.
She and her husband decided to have a child. They were blessed with
triplets – and the return of the mother's disease. Now she worries for
her husband and the three babies.
A man—one-third of victims are male, although the National Institutes
of Health treats CFS as a woman's disease–sums up the anger in the
community towards the political establishment, and particularly the
Centers for Disease Control which changed the name from Myalgic
Encephalomyelitis, in a controversial action.
He wrote: "Washington didn't so much forget – they were never told.
The CDC swept it under the carpet, despite the fact that their main
raison d'être is to investigate and sort epidemics of new diseases
before they take hold. Now, because of the CDC's wrongdoings, there
are more than 1 million people affected in the USA and possibly 17
million worldwide. Most of these people are too sick to stand up for
themselves, to fight back."
Breaking down the e-mails, I find these commonalities:
· Anger at the CDC and, to a lesser extent, the National Institutes of
Health and government in general.
· Tremendous suffering and horrendous problems with affording
treatment; frequent misdiagnosis, as doctors use a "dustbin" approach
that discards all the possibilities until they get to CFS.
· Anger at the media and others for not taking CFS seriously enough.
· The knowledge, with a cure rate of between 4 and 8 percent, that
they are awaiting the inevitable in huge discomfort. They are on
medical death row.
· Sufferers describing themselves as "living corpses." Alone with
their suffering, many commit suicide.
I'm not a medical writer. Writing about medicine has never interested
me. But in a career of writing for newspapers, spanning more than 50
years, I've never received so much mail that has so consumed the
thought process and torn at the heart.
There is a ghastly disease out there that cries out to be taken
seriously, to get proper attention in the medical world, and to be
prioritized along with the other big diseases claiming research
About How They Are Treated
Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out
About How They Are Treated Patients who suffer with chronic fatigue,
fibromyalgia, pelvic pain, TMJ, migraines, chemical sensitivities, and
more can speak out in an anonymous survey about how the medical
community treats them.
FOR IMMEDIATE RELEASE
PRLog (Press Release) – Oct 02, 2010 – Patients with "invisible"
illnesses, such as chronic fatigue syndrome, fibromyalgia, vulvodynia,
interstitial cystitis, migraine, irritable bowel syndrome, chronic
pelvic pain, and a host of other pain and inflammatory disorders have
tremendous difficulty finding the help and treatment they need; even
finding a diagnosis is a challenge. Doctors often dismiss their
symptoms as being imaginary, which further demoralizes an already
Now, as part of the research for a new book on how the medical
community treats patients with "invisible" illnesses, patients can
express their feelings and speak out through an anonymous patient
survey. All respondents will receive a downloadable pain trigger
According to Susan Bilheimer, author and survey creator, "It's time
that the medical community recognized that patients with illnesses
that are chronic and not easily diagnosed are not problem patients,
but patients with a problem. Just because you can't see pain and
inflammation doesn't mean they aren't real. There are certainly
exceptional doctors who understand chronic illness. But for those who
don't, I'm hoping to send a wake-up call that it's no longer
acceptable to dismiss and mistreat suffering patients."
So far, over 1,100 responses have been received. A number of
organizations, such as the National Vulvodynia Association
(www.nva.org) and the Interstitial Cystitis Association
(www.ichelp.org), have encouraged their members to take part.
To take the survey, go to http://www.surveymonkey.com/s/TDWVHDW
This survey is associated with the Invisible Illness Advocate
(www.InvisibleIllnessAdvocate.com) and Secret Suffering
(www.SecretSuffering.com) websites (Susan Bilheimer, founder, and
Robert J. Echenberg, MD, medical advisor).
About Susan Bilheimer: Susan Bilheimer is a writer, radio host, and
speaker on women's health issues. She is the co-author of "Secret
Suffering: How Women's Sexual and Pelvic Pain Affects Their
Relationships" with Robert J. Echenberg, MD. Her own journey with
perimenopause, pelvic pain, and invisible illnesses led to development
of websites and books to educate and empower patients. For more
information, go to www.SecretSuffering.com or
*Greg Crowhurst Oct 8 2010*
(permission to repost)
It 's a format that is screened all over the word. A TV show where a group
of incredibly ambitious 20 /30 somethings try to convince a wealthy
business man to take them on, as an "apprentice" for a 6 figure salary.
I wonder what the show might be like from an Severe ME Carer perspective :
" I am unique." : I will work for nothing, 24 hours a day, seven days a
"I am a go-getter." : I will take on the full force of the Global Medical
Insurance Industry that is doing all it can to deny you recognition and
"I make things happen." : I will spend a whole day, helping you get from bed
"I am not all talk... I can manage a team of people, total strangers even,
because I am feisty and have attitude." : I will find a way to work with
other stressed-out and incredibly ill people with ME , and other Carers, in
order to make things happen for you, like a doctor's visit.
"Caring is the new rock 'n' roll and I'm Elvis Presley" : I will never
cease, even after decades, to try and think to ways to ease your pain, to
bring you some comfort, to search for a things that might help you get
through another day.
"For me caring is about hard-work, attention to detail, being willing to
make mistakes and learning from these mistakes." : I will get it wrong,
often, because you are so sound sensitive, so touch, so light sensitive, so
tormented, so close to screaming in agony, even so I will try and learn the
best way to flow with your tiny scrap of energy.
"I knew I would be selected, not to sound big-headed... I've succeeded in
the companies I've worked for because I work hard and I'm honest." : I will
use all my life experience, professionalism, learning , every ounce of
creativity, every single talent I possess, to deal with , to cope with, to
help you get through, second by second , the unspeakable , never-ending
torment that you are in.
"I'm at the top of my game." : I love you more than ever, I have grown
immeasurably as a person, I have come to learn what is truly important, I
live now in six-figure moments.
Thursday, October 7, 2010
Founder & President
Whittemore Peterson Institute for Neuro-Immune Disease (WPI)
After her daughter suffered for several years from chronic fatigue syndrome, Annette Whittemore got busy. She created a research program and institute dedicated to uncovering the causes of and developing effective treatments for neuroimmune diseases, such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, Gulf War illness, atypical multiple sclerosis and autism.
She created a national network of researchers, doctors and patients along with an advocacy program that resulted in federal support for the institute. She established a partnership between the Whittemore Family Foundation, private donors, the State of Nevada and the University of Nevada, Reno to fund a $77 million dollar research facility at UNR's School of Medicine. In fact, Whittemore now is moving into WPI's recently completed clinical patient facilities and research laboratories at UNR.
She speaks often at international medical conferences and workshops and now is a voice for the neuroimmune community before federal and state legislatures.
Wednesday, October 6, 2010
Web Results 1 - 10 of about 4,470
Tuesday, October 5, 2010
Station: Cable News Network (CNN)
Date: October 24, 1999 Programme:
CNN & Time URL: http://cnn.com/TRANSCRIPTS/impc.html
SICK AND TIRED--------------
ANNOUNCER: CNN & TIME. Tonight, "Sick and Tired." ...
KAGAN: And how many are completely recovered?
Thank you for attending this CFSAC meeting and for the opportunity to address you with my concerns.
I write to you as a physician, former medical researcher, and person who has been disabled by Chronic Fatigue Syndrome. I am encouraged that some progress has been made since last year and would like to thank Dr. Harvey Alter's group for their study; Dr. Thomas Frieden for looking for a new CDC leader experienced in CFS; Dr. Francis Collins for personally attending the recent NIH XMRV workshop; Dr. Michael Gottesman for meeting with people affected by CFS and their families; and the numerous behind-the-scenes officials/ staff for organizing the XMRV workshop and the CFSAC meetings.
However there remains much to be done.
1. Increase collaboration with experienced non-governmental CFS
researchers/ clinicians and patient groups. The recent discrepancies in XMRV findings between various research groups highlights not only the importance of laboratory techniques but also how subjects are selected. The studies with positive results used clinicians (Dr. Dan Peterson, Dr. Anthony Komaroff, Dr. David Bell, Dr. Paul Cheney) who had decades of experience diagnosing CFS to select their subjects. The negative studies generally did not. Since CFS is an ill-defined illness, it would make sense to involve experienced clinicians in subject selection, as is frequently done in studies of other medical conditions, rather than using community-based random digit dialing, as the CDC did, to select subjects. I understand the need for community-based studies but it needs to be supplemented by clinic-based studies.
Similarly, patient have the biggest stake in this research, their lives, and many are eager to volunteer for studies or help out in any way they can.
Although patients and their families may seem to be a nuisance at times, realize that their true goal is not to make your life difficult but to get well. It's easy to lose sight of this - I know, I've been on the opposite side of the stethoscope. Tell us how we can help you work faster/ better and we will do what we can.
2. Perform a thorough review of the CFS research literature and
incorporate past findings into current materials and future research. In a recent meeting with Dr. Michael Gottesman of the NIH, people asked Dr. Gottesman why this medical condition had been ignored for the last 2 decades. Dr. Gottesman replied that it was due to a lack of concrete scientific, clinical and medical findings.  This is not true but I am not surprised by Dr. Gottesman's statement as it is representative of the mainstream medical and scientific community's ignorance. I might have said the same statement before I became ill.
There have been about 5,000 papers over the last 25 years documenting physiological abnormalities in multiple organ systems, including orthostatic intolerance, dysregulated immune functioning, aerobic metabolism issues, and abnormal SPECT/ fMRI scans. [2, 3, 4, 5] There are numerous past papers on the epidemiology of CFS.  However, little of this information, especially non-CDC study findings, has been discussed in CDC research papers or materials presented to the public within the last decade.
For example, materials directed towards health care professionals on the CDC website do not mention that outbreaks of CFS have been observed for many decades or that up to 80% of people who develop CFS start their illness with a flu-like illness.  Certainly, we do not what these observations mean yet but it might help clinicians diagnosis patients more accurately and as early as possible. Clinicians might even think to ask patients if they have family members/ contacts with CFS, thereby adding to the knowledge base
about the epidemiology of CFS. Healthcare professionals are no strangers
to medical controversies but rather than discussing these topics and letting professionals make up their own minds these topics are not mentioned at all on the website.
In October of 2009, CFSAC recommended that AHRQ complete a review of CFS for an NIH State of the Knowledge Workshop.  I hope this is still being considered, that AHRQ does a thorough job, and that the CDC re-evaluates what they present
as they are an influential agency. I have found much useful information
studies published by Dr. Leonard Jason, the International Association for CFS/ME, and the Journal of Chronic Fatigue Syndrome. Articles from these three parties are frequently not catalogued on Pubmed. Federal agency representative should also consider participating in the annual international conferences sponsored by various CFS research groups. Let's not re-invent the wheel here: use every bit of information available to solve this illness.
3. Investigate the long-term effects of CFS. Early studies examined
whether CFS increased the risk of lymphoma . Jason found, in a small study, that people with CFS died of cancer or heart failure at a younger age than people in the general population.  Young people, labeled as "crazy" and ill for years, have died with unexplained findings at autopsy including inflammation of the spinal dorsal root ganglions  and non-acute viral myocarditis .
The full recovery rate for CFS is less than 10% ; a 2009 survey by the CFIDS Association of America with 1,100 respondents showed that a large percentage of individuals had been sick for over 10 years. . A few studies have reported on CFS outbreak subjects 10 years later but they have relied primarily on written questionnaires or subject interviews rather than medical record review or interview with the subjects' physicians.
[15, 16] Subjective methods without confirmation may lead to an overestimation of improvement/ recovery and denial / downplaying of ongoing/ new symptoms.  In addition, CFS sometimes has a relapsing-remitting course such that many who believe that they have fully recovered find their symptoms returning years later.
Even though many questions surround CFS, do not let it delay research into this important topic. People are living with and dying of complications as we wait.
If more were known about long-term effects, patients and clinicians might know what to watch out for and perhaps existing treatments could be used to prevent or ameliorate complications.
4. Establish 5 Centers of Excellence for CFS. This has been requested as a top priority by CFSAC to DHHS since at least September 2004.  Centers of Excellence or a similar structure are needed to carry out coordinated multi-disciplinary research, clinical care, and education of health care professionals. There are already several institutions carrying out CFS research that would be superb candidates, including the Whittemore-Peterson Institute and former CFS Cooperative Research Centers like the University of Miami. Furthermore, if MLV-related viruses turn out to play a major role in this illness, already established HIV Centers of Excellence might be adapted to include CFS research as well.
Encouragement should also be given to young or new investigators interested in CFS. I have heard from research/ clinical colleagues that they are reluctant to invest their time/ energy due to lack of funding and the still-held view by more senior colleagues that CFS is a psychological illness not worthy of scientific investigation. Other than establishing Centers and waiting for investigator-initiated applications, NIH should consider issuing a new Request for Application (RFA) for CFS, especially in light of renewed interest by researchers with the recent XMRV findings.
5. Look into adverse effects of graded exercise therapy (GET).
Information about activity pacing and graded exercise therapy has been modified for the better on the CDC website over the last year. However, the CDC maintains a link to the United Kingdom's National Health Service program on GET.  Over the last decade, 34-82% of CFS sufferers surveyed in the UK have reported that GET has worsened their health, not improved it.  This is not unexpected given the physiological abnormalities that have been detected with exercise.  Furthermore, adverse effects of GET in studies have not been tracked or reported as rigorously as they should be.  While GET programs in the US may be different from those in other countries, this information should be taken into account when writing clinical guidelines.
6. Deliver CFSAC recommendations to Secretary Sibelius and ask for a
written response to the recommendations. I have seen CFSAC video casts where members have noted that there has been no response from DHHS on many of their recommendations. It is unclear even whether the recommendations have been read. This is an unacceptable situation. I do not expect DHHS to agree with all CFSAC recommendations but I do expect Secretary Sibelius or her representative (Dr. Howard Koh) to read through the recommendations and tell us yes, no, maybe, we need more information to make a decision, etc.
Patients understand that CFS is complex and that answers will not come easily but we want an honest effort and an appropriate response from our
government. Please do your best! I want to get well and return to my
work and my life. Thank you for your time and attention.
Sincerely, MD/ MPH/ person with CFS
1. Solomon R. Summary of Sept 7, 2010, meeting with NIH officials and
CFS patients and families.
2. Carruthers BM, van de Sande MI. Myalgic encephalomyelitis/ chronic
fatigue syndrome: a clinical case definition and guidelines for practitioners. An overview of the Canadian Consensus documents. 2005.
http://www.cfids-cab.org/MESA/me_overview.pdf . (Accessed 9/15/10.)
3. Cook DB, O'Connor PJ, Lange G, et al. Functional neuroimaging
correlates of mental fatigue induced by cognition among chronic fatigue syndrome patients and controls. Neuroimage. 2007 May 15;36(1):108-22.
4. Van Ness JM, Snell CR, Stevens SR. Diminished Cardiopulmonary
During Post-Exertional Malaise. Journal of Chronic Fatigue Syndrome. 2006;
5. Kennedy G, Khan F, Hill A, et al. Biochemical and vascular aspects
of pediatric chronic fatigue syndrome. Arch Pediatr Adolesc Med.
6. Briggs NC, Levine PH. A comparative review of systemic and
symptomatology in 12 outbreaks collectively described as chronic fatigue syndrome, epidemic neuromyasthenia, and myalgic encephalomyelitis. Clinical Infectious Diseases. 1994 18(1):, S32-S42.
7. A.D.A.M. Chronic fatigue syndrome.
8. CFSAC. Committee recommendations, October 29-30, 2009.
http://www.hhs.gov/advcomcfs/recomme.../10302009.html . (Accessed
9. Levine PH, Fears TR, Cummings P, et al. Cancer and a fatiguing
illness in Northern Nevada--a causal hypothesis. Ann Epidemiol. 1998 May;8(4):245-9.
10. Jason LA, Corradi K, Gress, et al. Causes of death among patients
fatigue syndrome. Health Care for Women International. 2006; 27:615-626.
11. Hooper R. First official UK death from chronic fatigue syndrome.
http://www.newscientist.com/article/...h-from-chronic-fatigue-syndrome-.html . (Accessed 9/15/10)
12. Schweitzer, M. Testimony before CFSAC September 2005.
13. Cairns R, Hotopf M. A systematic review describing the prognosis
of chronic fatigue syndrome. Occup Med (Lond). 2005; 55(1):20-31.
14. CFIDS Association of America patient survey April 2009.
15. Levine PH, Snow PG, Ranum BA, et al. Epidemic neuromyasthenia and
chronic fatigue syndrome in west Otago, New Zealand. A 10-year follow-up.
Arch Intern Med. 1997 Apr 14;157(7):750-4.
16. Strickland PS, Levine PH, Peterson DL, et al. Neuromyasthenia and
chronic fatigue syndrome in Northern Nevada/ California: a ten-year follow-up of an outbreak.
Journal of Chronic Fatigue Syndrome. 2001; 9 (3/4): 3-14.
17. Bell D. Fatigue with and without orthostatic tolerance.
Lyndonville News. May 2010. http://www.davidsbell.com/LynNewsV7N1.htm.
18. CFSAC. Committee recommendations. September 2004.
http://www.hhs.gov/advcomcfs/recomme.../09272004.html . (Accessed
19. Centers for Disease Control and Prevention. CFS Toolkit - graded
July 2010. http://www.cdc.gov/cfs/toolkit/get.html . (Accessed 9/15/2010)
20. Kindlon T. Adverse reactions to graded exercise therapy. May 2009.
21. Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.
Neuro Endocrinol Lett. 2009;30(3):284-99.
22. Larun L, McGuire H, Edmonds M, Odgaard-Jensen J, Price JR. Exercise
therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2009, Issue 1.
(Updated from 2003, Issue 4.)
Please continue to send your letters to CFSAC at firstname.lastname@example.org cfsac @
hhs.gov. Although the deadline has passed to put the information in the
packet to government officials, CFSAC will continue to accept letters until
the Oct. 12 meetings.
These letters will be available to meeting attendees on site and later on
CFSAC's website. [example:
OR snail mail/ call/ fax:
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Office of the Assistant
Secretary for Health U.S. Department of Health and Human Services Hubert H.
Humphrey Building, Room 712E 200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX)
Monday, October 4, 2010
* * *
"The new generation of antipsychotics has also become the single biggest target of the False Claims Act, a federal law once largely aimed at fraud among military contractors. Every major company selling the drugs — Bristol-Myers Squibb, Eli Lilly, Pfizer, AstraZeneca and Johnson & Johnson — has either settled recent government cases for hundreds of millions of dollars or is currently under investigation for possible health care fraud."
We had a recent post on one of our blogs which dealt with Fibromyalgia
The poster was interested in setting up a support group for fellow patients
It would be really great if you could drop into the blog and add any advice, suggestions or comments about the best ways patients can support each other.
Thanks for your help in advance
The Patients Voice