Friday, December 27, 2013

'I've got the bones of a 100-year-old': 22-year-old with severe ME could break a rib by just sitting up too fast

  • Jessica Taylor developed ME when she was just 14 years old
  • She was so ill she had to be fed through a tube for two years and could not speak for 18 months - was unable to move anything other than her head
  • As she has been in bed for so long, she has developed osteoporosis
  • This means she could break her back or hip just by sitting up too fast
  • She is now at home but has to have 24-hour a day care, can't leave her room and needs a hoist to move her from her bed to a chair
  • She has launched a charity called Share A Star from her bed - aims to make sick children feel special and sends them packages of goodies in hospital

By EMMA INNES PUBLISHED: 09:45 GMT, 25 December 2013: L

A 22-year-old former netball captain says she ‘lost everything’ when severe ME caused her to be bedridden and to develop the 'bones of a 100-year-old'.

Jessica Taylor, from Rochester, Kent, spent four continuous years in hospital and has not left her bed for seven years.

While she was in hospital, she was so ill she couldn't recognise her family, had to be tube-fed and was unable to move anything other than her head.

As she has been in bed for so long, Jessica has now developed severe osteoporosis and was told by doctors that she has ‘the bones of an 100-year-old’.

She remains so weak she is barely able to sit up and just moving from her bed to a chair requires the use of a hoist.
Jessica told MailOnline: ‘My life is a world of one room. The ME caused me to lose everything in the end.

‘I’ve got a fight on my hands and I believe I am going to get better.’
Jessica first fell ill when she was 14.

She suffered a bout of the flu which she never recovered from and, despite trying to push herself, her health rapidly deteriorated and within nine months she was bedridden.

Read more>>

Wednesday, December 25, 2013


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Sunday, December 8, 2013

Immune Abnormalities in Patients Meeting New Diagnostic Criteria for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Immune Abnormalities in Patients Meeting New Diagnostic Criteria for
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Brenu EW1,2*, Johnston S1,2, Hardcastle SL1,2, Huth TK1,2, Fuller K1,2, Ramos SB1,2, Staines DR2,3 and Marshall-Gradisnik SM1,2
1School of Medical Science, Griffith University, Gold Coast, Queensland, Australia
2The National Centre for Neuroimmunology and Emerging Diseases, Griffith Health Institute, Queensland, Australia
3Queensland Health, Gold Coast Public Health Unit, Robina, Gold Coast, Queensland, Australia

Background: Immunological abnormalities have been identified in Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis patients fulfilling the 1994 Centers for Disease Control diagnostic criteria. Significant developments have been made to diagnostic criteria, but potential immunological markers have not been assessed in patients fulfilling these latest clinical requirements. Therefore, this study evaluated immunological parameters in patients that also fulfill the latest diagnostic criteria available known as the International Consensus Criteria.
Methods: The Immunological investigations including Natural Killer cell activity and phenotyping studies for
dendritic cells, neutrophils, B cells and regulatory T cells were performed on whole blood samples collected from all participants using flow cytometric protocols. The physical functioning of all participants was also evaluated using scores from the Short Form Health Survey, and the World Health Organization Disability Adjustment Schedule.
Results were compared according 1994 Centers of Disease Control and Prevention defined patients, and
International Consensus Criteria defined patients, and healthy controls.
Results: Natural killer cell activity was consistently and significantly decreased, and regulatory T cells were
significantly increased in both patient groups compared to healthy controls. Differences were found in human
neutraphil antigens and expression of natural killer cell receptors between patient groups. Highly significant
correlations were also found between physical status and some immune parameters in International Consensus
Criteria defined patients.
Conclusion: This preliminary investigation on different diagnostic criteria suggests that the International
Consensus Criteria may be more effective a detecting salient differences in the immune system. Read more>>

Wednesday, December 4, 2013

Vote for November's Project of the Month! Vote for Canary in a Coal Mine

It's time to choose November's Project of the Month. The project that receives the most votes for Project of the Month will receive a consultation from our Project of the Month partner, Tribeca Film Institute!
Voting will be open until Friday December 6 at 5 PM Eastern.
"Mudbloods" is a feature documentary that follows the UCLA Quidditch team on their journey to the 5th Annual Quidditch World Cup. The film is about the fearless, bold individuals who dedicate their lives to the sport of Quidditch; the entrepreneurial force behind the International Quidditch Association; and the cultural phenomenon that has defined a generation. It’s a sports doc unlike anything you've ever seen because it's a sport you could've never imagined... until now.
"Canary In A Coal Mine" is the story of one of the worlds most prevalent, devastating, and misunderstood diseases. It follows Jennifer as she documents her own story and the stories of several extraordinary individuals struggling to find their way, fight, accept and sometimes even thrive in spite of "an illness that has no end." At its heart, the film asks: what does this illness signify about the world we live in and what do we all risk by ignoring the voices of the sick and the profoundly invisible? What could we all learn by paying attention to those voices?
A group of thieves reunite five years after a failed heist to determine what went wrong and who is to blame as they attempt to recover the missing loot. Starring: Max Casella (The Sopranos, Blue Jasmine, Inside Llewyn Davis, Killing Them Softly, Spike Lee's OldBoy) and 4x Tony-nominated actor Danny Burstein (Boardwalk Empire). This is the debut feature from writer/director Scott Kawczynski.
Pier Kids: The Life examines the legacy of Stonewall and the Gay Rights Movement it ignited by following the lives of DeSean, Krystal, and Casper, three gay and transgender youth of color who, after being pushed out of their home because of their sexuality, have become homeless on the same street the riots took place more than forty years ago. Together, these three people weave a surprisingly complex story of love, family, exploitation, beauty, and hope. But it's more than the story of three. It's the story of thousands.

"Naz + Maalik"

Two first-generation African-American Muslim teens — close friends, classmates, business partners and something more – have their Friday, and potentially their entire lives, ruined by surveillance as their ambiguous and secretive relationship sets off flags among the relentless bureaucrats still fighting the War on Terror in the far-flung outpost of Bed-Stuy.

Note:  Votes are confirmed by email.  After voting, please look for an email from Poll Daddy and confirm your vote.  Indiewire nor PollDaddy use your email address after the confirmation, but if you do want to sign up for our newsletter, why DON'T you mosey on over here and do so!

Which Project Do You Most Want to See?

Saturday, November 23, 2013


November 20th, 2013 

At a medical conference today sponsored by the New York ME and CFS Center at Mt. Sinai and held at the New York Academy of Medicine, researchers showed that a form of treatment called Graded Exercise Therapy (GET) which has been lauded by the UK’s National Institute of Clinical Excellence (NICE) and recommended by the U.S. Centers for Disease Control and Prevention (CDC) may not help ME/CFS, but actually can make it worse. Unfortunately, the CDC has long been touting that certain exercise regimens can help manage the disease, even offering guidance on their website.
Dr. Derek Enlander, Dr. Eric Schadt, Dr. Miriam Merad, Dr. Christian Becker and a team of researchers at Mt. Sinai Medical Center have discovered new research on ME/CFS that could change the way the disease is treated. Their research shows that the disease is tied to the immune system much more than originally thought. A recent study showed patients can actually relapse when they partake in excessive exercise, and other therapies maybe more effective.
“We want to raise awareness about this disease, how it affects the body and the best way to treat it,” Dr. Enlander said. “For too long, this disease has been misunderstood, leading to a poor quality of life for far too many patients. We hope to change all that.”
Myalgic Encephalomyelitis was first identified in the mid-1950s, by Dr. Melvin Ramsay of London’s Royal Free Hospital, after being suspected of outbreaks dating back at least two decades’ prior. What is thought to have been an outbreak in Nevada’s Incline Village in the mid-1980s, mirroring one in rural upstate New York’s Lyndonville, led to the CDC officially recognizing a condition reduced Chronic Fatigue Syndrome in 1988 following the elimination of the Epsten-Barr virus as a potential culprit. The CDC has displayed an inconsistent track record ever since, diverting millions of dollars earmarked for research in the disease to other causes in a scandal uncovered some 15 years ago. Recent estimates suggest that hundreds of thousands of people in the U.S. suffer from CFS, although the CDC is thought to have both underestimated the severity of the disease, while overestimating the numbers, as they have reported a disease prevalence of 2.54% in the U.S. This figure is not accepted by experts in the field. Using the more-accepted figure of 0.4% would estimate the number of sufferers in the New York City Metropolitan area alone at over a half million patients, the majority of whom are likely undiagnosed.
The illness which afflicts women to a greater degree than men, causes severe immunologic dysfunction, profound loss of energy (sometimes referred to as fatigue, though in many cases patients would report that this term is inadequate as a descriptor), sleep disorders, neurological disturbances, pain, and other symptoms. Underlying causes and treatments for CFS have been elusive, but new research is shedding light on how the disease works.
Media Contact: Andrew Moesel

Tuesday, November 19, 2013

longer disease free survival in CFS with antiviral/immunoglobulin treatment than with other treatments

European Review for Medical and Pharmacological Sciences 2013; 17: 2847-2852

Treatment of 741 italian patients with chronic fatigue syndrome

Department of Medical Oncology, Division of Medical Oncology A, National Cancer Institute of
Aviano, Pordenone, Italy
1Department of Molecular Oncology and Translational Medicine, Unit of Epidemiology and
Biostatistics, National Cancer Institute, Aviano, Pordenone, Italy

Abstract. – BACKGROUND: Chronic Fatigue
Syndrome (CFS) is a distinctive syndrome characterized
by specific symptoms cluster. CFS
mostly affects women and often results in severe
functional limitation. Its prevalence varies
from 0.4 to 2.5% in the general population. In our
prior studies on the clinical features of 205 CFS
patients we founded immunological and brain
abnormalities. In this paper we illustrate our
caseload on CFS treatment.

2000 to December 2005, we evaluated all the patients
admitted at the CFS Unit of the Aviano National
Cancer Institute, for staging procedures
and treatments. Patients not meeting the Fukuda
diagnostic criteria were excluded.

RESULTS: 250 male and 491 female (median
age 35.5 and 39.3 years, respectively) were enrolled
and treated for CFS. As expected, CFS resulted
from previous infectious disease in all
patients. Female patients showed to be more
affected by symptoms than male patients. The
treatment schedules followed by the patients
included nutritional supplements alone, corticosteroids,
antidepressant/sedative drugs, and
antiviral/immunoglobulin drugs. Antiviral/ immunoglobulin
drugs achieved the best response
(15.3% positive responses vs. 8.3%
negative responses; OR 0.44, CI 0.26-0.74, p =
0.002). The carrying out of 4 or more treatments
showed a protective effect (OR 0.46, CI 0.28-
0.77, p = 0.003). This finding was confirmed in
the multivariate analysis, adjusted by type of
drugs (OR 0.49, CI 0.28-0.84, p = 0.009) and
number of treatments carried out (OR 0.51, CI
0.30-0.86, p = 0.01); these two variables were independent.

CONCLUSIONS: These findings show that the
antiviral/immunoglobulin approach has a longer
positive disease free survival in comparison
with other approaches. However, CSF still remains
a difficult disease to be effectively treated.

  article .pdf

Monday, November 18, 2013

MTV Act: Canary in a Coal Mine, A film about life with M.E., the most prevalent and devastating disease your doctor has never heard of

MTV Act:
What would it be like to have a disease that makes it so you can barely move and have a doctor suggest that it might be all in your head? The documentary “Canary in a Coal Mine” shows this scary and true scenario in the lives of different people suffering from myalgic encephalomyelitis.
Jennifer was a PhD student at Harvard who suddenly wasn’t able to write her own name. She continued to get worse, to the point she couldn’t even sit up. What was the problem?
“The disease, myalgic encephalomyelitis, was re-branded in the 1980s by the CDC as 'Chronic Fatigue Syndrome,' a name which became both a punchline and a Rorschach: a wastebasket of undiagnosed conditions hiding a very real disease,” says a writeup about “Canary in a Coal Mine.” “Scientists at the country's top institutions have found evidence of profound metabolic, neurological, and immunological dysfunction in patients with M.E.. However, since the disease is not taught in medical schools, doctors don't know how to recognize it, effectively denying healthcare to a million Americans.”
Because of how scary this is, and because of a need to spread awareness, Jennifer has made the documentary “Canary in a Coal Mine,” which stars her and other people who have myalgic encephalomyelitis. There’s a Kickstarter to fund it, and though they’ve reached their needed goal, they’re hoping to become the most supported doc on Kickstarter ever. Take action below to help!

Friday, November 15, 2013

The Independent: 10 best charity Christmas cards 2013, No 1. Invest in ME !!

The Independent, SALLY NEWALL Friday 15 November 2013:

It's almost time for the big festive mail-out - consider these charity cards. 100% of your money goes to the cause

1. Invest in ME
The charity ran a competition for ME patients and their carers to submit photos. We think this vibrant entry by Julie-Ann Gylaitis is a festive triumph.
£4.25 for 10

2. Artfelt
The arts programme at Sheffield Children's Hospital commissioned local artist Pete McKee to design their card this year. The result? A sweet but interesting little cartoon of McKee’s own dog Frank.  
£3.50 for 8

The cartoonist Giles was a keen sailor and did lots of work for the RNLI. His designs are bestsellers for the charity.  

Everyone’s favourite desert dweller has made it onto the front of the animal charity's card. Another design features some kissing tortoises. Pucker up.
£4 for 10

5. Riders for Health
Ideal for motorbike fans but actually it’s just quite a cool design. The money goes to mobilising health workers in Africa, designed by one of the charity’s volunteers.

This cute robin’s the work of Jacob, 6, a patient at Great Ormond Street.  
£4.50 for 10

7. Child bereavement UK
Donated by artist Charlie Macksey, this dove design makes an elegant card.
£4.75 for 10

8. Sustrans
A nice cycling design from the charity that investing in helping people travel by foot, bike or public transport. Cyclists will like this one

9. Home Start
Kirstie Allsop commissioned this design for the charity. It’s by paper artist poppy chancellor and we think it makes a lovely snowflake.
£4.75 for 10,

10. Action medical research for children
Uninspired by many charity Christmas efforts, gallery owner Lynn Tait a gallery owner got card designers  to contribute a piece of their work exclusively to the medical research charity. This cycling Santa’s by Julie Hook.
£2.50 for six,

Thursday, November 14, 2013

An Open Letter to the Institute of Medicine Regarding the HHS/IOM Contract

An Open Letter to the Institute of Medicine Regarding the HHS/IOM Contract

November 12, 2013 at 7:19pm
An Open Letter to the Institute of Medicine Regarding the HHS/IOM Contract for New Diagnostic Criteria for ME/CFS

November 12, 2013
As a person severely disabled by the neurological disease myalgic encephalomyelitis, ICD-10 G93.3 (ME) for 17 years, I request that the Institute of Medicine (IOM) cease work on its contract with the Department of Health and Human Services (HHS) to "evaluate the current criteria for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" [1] and seek to terminate this contract. My primary reason is that the IOM, as an organization, is not appropriate to oversee this task and has already approved a report this year which shows a preexisting bias toward, and a lack of knowledge of, ME and chronic fatigue syndrome (CFS). This is the IOM's January 2013 report on Gulf War illness (GWI), which the IOM's panel renamed "chronic multisymptom illness" (CMI), "Gulf War and Health: Treatment for Chronic Multisymptom Illness." [2]
On page 22 of the report, there is the following statement:
The common thread among the terms is that symptoms experienced by patients cannot be explained as pathologically defined, or organic, disease (Sharpe and Carson, 2001). Such syndromes as irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS, also called myalgic encephalomyelitis), and fibromyalgia often are included in this group of unexplained illnesses, as are chronic unexplained symptoms that do not meet case definitions for IBS, CFS, fibromyalgia, and other functional somatic syndromes that have specified diagnostic criteria. [Emphasis added] [2, page 22]
An unbiased approach would not seek to equate the neurological disease myalgic encephalomyelitis (ME) with the diagnostic category chronic fatigue syndrome (CFS) created by the US Centers for Disease Control (CDC) in 1988 and redefined in 1994. [3, 4] These two terms have different case definitions and different classifications. The term myalgic encephalomyelitis was first used in the 1950s for well-characterized outbreaks of the disease. [5] Benign myalgic encephalomyelitis (ME) has been classified in the World Health Organization's International Classification of Diseases (ICD) tabular listing under "Diseases of the nervous system" as ICD-10 G93.3 since 1969. Chronic fatigue syndrome (CFS) has been classified by the CDC's National Center for Health Statistics in the current US version of the ICD under "Symptoms, Signs, And Ill-Defined Conditions" as ICD-9-CM 780.71. Clearly, the two terms ME and CFS are not equivalent.
Neither is ME nor CFS a "functional somatic syndrome." The sole reference the report gives supporting CFS as a "functional somatic syndrome" is a 2001 psychiatric study. Many other studies have presented scientific evidence that this is not the case. Literally hundreds of published, peer-reviewed studies, including those done on subjects more accurately described as having ME, have shown the CFS diagnosis is applied to patients with an organic illness and with a range of measurable physical abnormalities, and, therefore, should not be considered a "functional somatic syndrome." A listing of the most prominent of these studies can be found in the document published in 2003, "Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols," [6] which has come to be known as the Canadian Consensus Criteria (CCC) and the 2011 document, "Myalgic encephalomyelitis: International Consensus Criteria," the ME ICC. [7]
Seeking to conflate ME with CFS and labeling CFS as a "functional somatic syndrome" shows a striking lack of objectivity and psychiatric bias by the committee the IOM selected to study GWI and whose report the IOM approved. How can the IOM now consider itself free from a disqualifying conflict of interest in selecting an "ME/CFS" committee and sanctioning its report? The IOM has already approved a report claiming that ME and CFS are not "real" illnesses but rather "functional somatic syndromes." Is the IOM going to retract its prior report if the committee it selects to study "ME/CFS" concludes differently? Will the IOM approve two reports in little over two years which contradict each other? How can the IOM consider itself an unbiased, neutral overseer of an "ME/CFS" panel when the IOM has already approved a report this year reaching highly controversial conclusions on the same topic?
Even more troubling is the section on CFS (pages 97-100) of the IOM's 2013 GWI report under "Review of Treatments for Comorbid and Related Conditions." Again, the report attempts to conflate CFS with ME saying:
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, affects an estimated 4 million people in the United States, according to the Centers for Disease Control and Prevention (CDC), with prevalence estimates ranging from 0.2% to 2.54% (Maquet et al., 2006; Reeves et al., 2007). [2, page 97]
It is notable the prevalence rate of 2.54% for CFS that the report cites is based on the discredited and now little-used 2005 "Reeves" criteria for CFS. [9] A more thorough and critical review of the literature would have shown the unreliability of this number.
The only two sets of diagnostic criteria for CFS the CMI report lists are the 1994 Fukuda criteria [4] used by the CDC and the 2007 NICE guidelines for "CFS/ME" [8] used by the UK National Health Service. There is no mention of the two sets of nongovernmental consensus criteria for the disease, the 2003 CCC or the 2011 ME ICC. How is it possible that a balanced review of CFS fails even to mention these two documents? The Fukuda criteria have been widely criticized for being out-of-date, nonspecific and overly broad. The 2007 NICE guidelines have been criticized for using confusing, unclear terminology ("CFS/ME" does not appear in the WHO's or any country's ICD), being psychiatrically oriented and recommending ineffective and unsafe treatments for "CFS/ME" which are unsupported by appropriate evidence.
Under "Treatments for Chronic Fatigue Syndrome" the report states:
Two specific therapies are recommended for people who have CFS: CBT and graded exercise therapy (GET) (CDC, 1994; Mayo Clinic staff, 2011; National Collaborating Centre for Primary Care, 2007). CBT provides a framework for patients to change how they think and feel about their illness and teaches behaviors that provide patients with a greater sense of control over symptoms (CDC, undated; National Collaborating Centre for Primary Care, 2007). Exercise has been associated with the body’s natural release of endorphins, natural pain relievers. Both exercise and endorphins have been shown to improve a number of the symptoms of CFS and related syndromes (Cleare, 2003; Harber and Sutton, 1984). [2, page 99]
In giving a blanket recommendation of exercise as a treatment for CFS, the authors of the report appear to be unaware that the hallmark symptom for CFS and ME is post-exertional malaise (PEM), an exacerbation of symptoms and possible relapse after exercise. The CCC states:
As much care must be taken in prescribing exercise as in prescribing medications to ME/CFS patients. (100). Exercise programs must be entered cautiously as clinical studies have indicated that symptoms worsen in approximately half of the ME/CFS patients. (100,101) [6, page 43. See the original document for the references cited.]
Where is this vital caution given in the report's CFS treatment section? It appears to be medically irresponsible for a report to recommend exercise for CFS without mentioning the harm exercise is known to cause in CFS and ME patients. Will the IOM retract its GWI report if its "ME/CFS" report acknowledges the often irreparable harm exercise can cause in patients? The IOM's conflict of interest here seems to be overwhelming.
Also, in recommending cognitive behavioral therapy (CBT) as a treatment for CFS the report is endorsing a psychiatric approach to a physical disease. A more thorough review of the research literature would indicate that this is a contested view that is not supported by studies using well-characterized CFS subjects. Often psychiatric studies rely on subjects labelled CFS, using criteria such as the 1991 Oxford [10], or the 2005 Reeves [9] criteria, who only report experiencing prolonged fatigue and would not meet more specific criteria for the disease such as Fukuda, the CCC or the ME ICC. Again, will the IOM withdraw its GWI report if its "ME/CFS" committee concludes that CFS and ME are not appropriate illnesses to treat primarily with psychotherapy such as CBT?

My second reason for requesting the IOM not fulfill its "ME/CFS" contract with HHS is that an unprecedented consensus of the experienced and knowledgeable experts on the disease from the medical and research communities has already been reached. On September 23, 2013, a landmark consensus of 35 leading clinicians and researchers in an open letter to HHS Secretary Kathleen Sebelius announced they had reached a consensus supporting the universal adoption of the CCC and opposing HHS's proposed contract with the IOM. [11] The list of signers includes  Drs. Daniel Peterson and Paul Cheney, who were present at the 1984 Incline Village/Lake Tahoe outbreak and who have devoted their lives to treating and studying the disease, and also Dr. Daniel Bell who devoted his career to the disease after the 1985 Lyndonville, New York outbreak. Dr. Nancy Klimas, Dr. Jose Montoya of Stanford University, Dr. John Chia, Dr. Martin Lerner, Dr. Derek Englander, Dr. Charles Sheperd, Dr. Kenny De Meirleir  and many more of the world's top ME and CFS doctors and researchers are all signers. On October 25, 16 additional experts signed the letter and, with one retraction, brought the total to 50. The letter states:
The expert biomedical community will continue to refine and update the case definition as scientific knowledge advances; for example, this may include consideration of the 2011 ME International Consensus Criteria (Carruthers et al, Journal of Internal Medicine, 2011).  As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care. This step will facilitate our efforts to define the biomarkers, which will be used to further refine the case definition in the future. [Emphasis added]
One must question why would HHS pursue an expensive contract for another set of unneeded "ME/CFS" diagnosis criteria when an excellent set already exists in the CCC ready for use today and endorsed by an overwhelming consensus of the most qualified and experienced members of the medical community? In addition, the experts agree the CCC is ready now to serve as a research definition. This will spare the NIH the resources and expense of developing a completely separate research case definition which is now underway in the NIH's so-called Evidence-Based Methodology Workshop project.
How can the members of the Institute of Medicine ignore the collective opinion of their most experienced and respected colleagues and proceed to supervise development of diagnostic criteria in a field in which they have no experience? It is the responsibility of all professionals not to undertake work for which they are not qualified to perform. The September 23 letter clearly states that by fulfilling this contract, in lieu of adoption of the Canadian Consensus Criteria, the Institute of Medicine will impede research and harm patient care. Not just one patient will be harmed, but potentially hundreds of thousands. How can it be considered ethical for the IOM to fulfill a contract for an additional set of "consensus" diagnostic criteria for "ME/CFS" when a true consensus has already been reached by their more qualified professional colleagues?
A former president of the IOM, Dr. Kenneth Shine, has already admitted the Institute has little experience with disease definitions and that he could not recall when the IOM was last charged with defining a disease. [12] In spite of the Institute's expertise in healthcare policy, none of its members is experienced or expert in the field of ME or CFS. The IOM will have to rely on the opinions and experience of its selected committee members. One may ask, without experience in a disease how will the IOM know whom to select? With the leading experts in the field almost entirely on the record as opposing the HHS/IOM contract in favor of adopting the existing CCC, how will the Institute find "12 to 16" qualified experts to serve on the criteria committee? The only "experts" the IOM will be able to obtain to serve on the committee will be professionals who have ignored the considered judgement of their most distinguished colleagues. Unfortunately, some of these alleged experts on ME and CFS are researchers with agendas to keep the diagnostic and research criteria nonspecific to make it easier for them to obtain research funding in their specialty – usually fatigue studies or psychiatric behavioral research.
The IOM will be forced to select people from the second and third tier of "experts." How can such a panel ever hope to have the competence of the 50 top experts who signed the letter? Some doctors will accept an IOM-sanctioned report because of the perceived authority of the IOM and HHS. Other more knowledgeable practitioners and patients, however, will simply ignore an IOM "ME/CFS" report knowing that the true experts in the field opposed it. How can new IOM diagnostic criteria even be considered a true "consensus" clinical definition? The consensus of experts in the field has already chosen the CCC. How can there be two different consensuses in the same field?
What are the arguments that this contract is necessary? One is that the CCC needs updating. Not only does the consensus of leading experts disagree, but the CCC has already been updated by the 2011 Myalgic Encephalomyelitis: International Consensus Criteria (ME ICC) as cited in the experts' letter. Again, this work has already been done and does not need repeating. If it is widely believed the CCC needs updating, HHS should simply adopt the ME ICC instead of the CCC.
Another argument is the broad diagnostic category of chronic fatigue syndrome needs to be broken up into more coherent subgroups. Does anyone really believe that an inexperienced IOM committee, which will have only time to review the literature and listen to testimony in less than 18 months, will be what is needed finally to develop meaningful subgroups, which have been required for over 20 years with no progress to date?
If the IOM committee finds it necessary to create a new umbrella term to fulfill the contract or considers "ME/CFS" to be an umbrella term, "distinguish between disease subgroups" could be interpreted to mean to consider ME and CFS as subgroups under the new umbrella term. This would not be helpful for understanding or diagnosing the disease, and cannot be done by simply reviewing the existing literature – especially by newcomers to the disease. There has been no research on CFS with ME subjects explicitly excluded. Any characteristics of non-ME CFS must be determined by new research, as the ME ICC has suggested. ME has already been case-defined by the CCC. Instead of considering ME to be a subgroup under some unnecessary umbrella term, it is more rational and straightforward to adopt the CCC as recommended by the experts on the disease.

My third reason is that this contract does not meet HHS' claim that it is fulfilling the recommendation of the Chronic Fatigue Syndrome Advisory (CFSAC). The recommendation by the CFSAC at its October 2012 meeting was this:
CFSAC recommends that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) experts, patients, advocates workshop  in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes. [13]
Nowhere does it say to hire an inexperienced non-profit medical organization and give them the authority to develop one set of new diagnostic criteria for not only combined ME and CFS, but also any condition referred to by terminology in use for "this illness." This is a vast overreach and interference with the integrity of science by HHS for which it is attempting to use the CFSAC recommendation as political cover. The contract does not require consultation with CFSAC members as requested in the recommendation, but only with the CFSAC ex officio agencies. It is obvious HHS' claim that, "This activity is in support of the Chronic Fatigue Syndrome Advisory Committee" is not justified by the CFSAC's recommendation. 

My fourth reason is that the contract is unclear and impossible to fulfill rationally or ethically. The Statement of Work (SOW) project title is "Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome." [14]  The term "ME/CFS" is now solely case-defined by the CCC. Later in the SOW, however, we find HHS has taken it upon themselves to redefine "ME/CFS," for purposes of the contract, as "Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Neuroendocrine Immune Disorder, and other terminologies in use for this illness." [Emphasis added] How could it be possible to come up with one clinical definition for all these very different conditions? The new definition would have to be as broad as the broadest terminology in use. It is completely unclear what HHS means by "this illness." The terms in use refer to many different and unrelated conditions, not any single illness. The term "CFIDS" has no case definition. Who knows what it refers to? It is totally open to a variety of interpretations what "this illness" means, if anything.
The contract makes the assumption that ME, CFS and other terminologies in use refer to a single illness or, at least, a related group of illnesses. This assumption is totally unwarranted and unsupported by evidence. The present situation is not that simplistic. The terms ME and CFS are not equivalent and do not refer to the same group of ill people. The CDC itself says this in a 2010 study.
The 1994 International [Fukuda] CFS case definition and the Canadian Consensus Criteria are different and do not necessarily identify similar groups of ill persons. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy. The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic [sic] condition considered exclusionary for CFS.... [15]
HHS has set an impossible task. It shows a lack of fundamental understanding of the disease by HHS – unless they are intending the IOM come up with a new definition so broad and inclusive as to be meaningless and unnecessary. This is exactly what the IOM did with Gulf War Illness which it defined as "the presence of a spectrum of chronic symptoms" and gave the vague new name "chronic multisymptom illness" (CMI) based on a single 1998 CDC study. [2] What doctor is going to take such a nonspecific and all-inclusive name seriously? The IOM has done our physically ill and disabled veterans with Gulf War illness a great disservice and injustice. The 2013 IOM report on what is now "chronic multisymptom illness," with a clinical case definition so broad that almost any chronically ill person with no other diagnosis could qualify for CMI, indicates the IOM's lack of experience and fitness for developing clinical case definitions for a disease. It is shocking that HHS has seen it appropriate to give the IOM the opportunity with this new contract to mishandle yet another important clinical case definition. People with ME have already suffered for decades because of inappropriate, inaccurate and overly broad clinical case definitions applied to them This contract can only result in an even more inappropriate and inaccurate set of diagnostic criteria being applied to people with ME.
The current CDC 1994 Fukuda CFS case definition [4] is already overly broad and nonspecific. The CDC diagnostic criteria based on this research case definition are so broad that they select not only patients who would be more accurately diagnosed with ME, but also patients experiencing prolonged fatigue due to various unrelated and undiagnosed medical conditions, or solely due to psychiatric disorders. What is required are more specific criteria – not less specific criteria. Doctors need to be able to make a differential diagnosis based on specific symptoms which are unique and characteristic of a disease to treat properly that specific disease. The common symptom of reported prolonged fatigue is not sufficient to make this distinction.
The 1991 Oxford case definition for CFS is basically 6 months of reported substantial fatigue. [10] Oxford CFS isn't even a syndrome. A syndrome is a group of symptoms that consistently occur together. Oxford CFS relies on a single symptom, fatigue. Certainly there is no common underlying pathophysiology for all reports of 6 months of unexplained fatigue. Nevertheless, Oxford CFS is a term "in use for this illness." It was used in the controversial 2011 PACE trial [16]. If the new definition for "ME/CFS" is to include other terminology "in use for this illness" which includes Oxford CFS, it could be interpreted to require creating an umbrella term based on the single symptom of fatigue – "chronic fatigue-related illness," perhaps, or some other meaningless term. Surely this could  not be what HHS intended. Indeed, it is very unclear and ambiguous from the language of the SOW what HHS intended.
The "2007 NICE Clinical Guidelines for CFS/ME" [8] are included for review by the IOM committee in the SOW. "CFS/ME" is a NICE-invented term constructed to conflate CFS and ME and redefine them both as little more than chronic fatigue to encourage the use of exercise and psychotherapy as primary treatments. An experienced and unbiased reviewer can easily detect a political and psychiatric bias in the NICE guidelines.
One wonders why HHS included such a psychiatrically oriented, unscientific set of clinical guidelines in the first place. The NICE guidelines define neither CFS nor ME. An inexperienced IOM committee member could be easily misled by the persuasive language and scientific appearance of the NICE guidelines into thinking they might be relevant to their task, especially after another IOM committee has prominently relied on the NICE guidelines.
Data from the ongoing CDC Multi-site Clinical Study of CFS are also included for review by the IOM committee. The history of the CDC with chronic fatigue syndrome has been characterized by one blunder after another. This history is well described by author Hillary Johnson in her book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic and more recently by New York Times writer David Tuller in his article, "Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale." [17] The CDC sent two inexperienced investigators to the Lake Tahoe region of Nevada in 1985 to investigate an outbreak of an unknown disease. Based on a small amount of information collected and inconclusive research, a CDC committee named the disease chronic fatigue syndrome in 1988. [3] However, the committee failed to recognize that the same disease had already been named in the 1950s and had been listed in the World Health Organization's International Classification of Diseases as myalgic encephalomyelitis under "Diseases of the nervous system,"G93.3, since 1969. Since the 80s, the CDC has been trying to justify the enormous blunder it made when it invented CFS.
The CFS diagnosis is a social construct in that CFS describes no objective entity in the real world. The 1994 Fukuda CFS case definition is so broad and nonspecific that it picks up not only ME, but various other unrelated conditions which have fatigue as a symptom. The Fukuda CFS definition is still in use today after impeding progress in research on the actual disease, ME, for almost 20 years. If allowed by HHS, the inept CFS program at the CDC will continue collecting more data forever and doing endless studies of its phantom CFS.
Unfortunately, the CDC also does great harm by providing doctors and medical personnel with false and misleading information on its CFS that is irrationally and unethically applied to patients who have ME. At this point, how could anyone believe the CDC could do anything right for the actual disease. This is the agency that gave the disease the wrong name and wrong case definition. If allowed, the CDC will continue indefinitely to mix ME together with chronic fatigue and call it CFS – methodology unworthy of a junior high science fair.

The CDC can get away with it because they are protected by the powerful Department of Health and Human Services which wishes to preserve the illusion of the CDC's infallibility and authority at all costs. These costs are enormous – billions of dollars a year in lost productivity and direct costs because ME patients aren't medically treated properly due to the policies of the CDC. The CDC's so-called Multi-site Clinical Study of CFS most likely will produce unhelpful, confusing and inconclusive results. Then the CDC will go back to collecting more useless data and misinforming doctors. Remember, after 28 years the CDC is still studying the wrong condition with the wrong name – CFS. Adoption of the CCC would end this tremendous waste and make accurate diagnostic and treatment information available to doctors.
ME, included in "this illness" by the SOW, requires its own more specific clinical definition. HHS should have been aware of this. The contract demonstrates a total lack of understanding of the neurological disease ME by requiring the IOM to develop a single set of criteria including both CFS and ME. Anyone with experience and competence in the field would know this can't be done practically or ethically. By seeking to blend together ME and CFS, HHS has chosen to protect the CDC which has made disguising ME within its catch-all CFS diagnosis a policy in order to save face. HHS, evidently, has decided preserving the CDC's credibility, and the profits of private insurance companies, is more important than the lives of hundreds of thousands of ME patients in the US – millions worldwide. Fortunately, the CCC is a specific ME case definition and is already available. All HHS has to do is issue a memo telling doctors and researchers to use the CCC, as the top experts of the medical community have recommended. ME patients would then begin to receive better care, and research would begin to make significant progress.
Although the CCC uses the transitional term "ME/CFS" it is an ME case definition. The 2005 extract of the CCC called the CCC Overview [18] confirms that "ME/CFS" here refers to ICD-10 G93.3, benign myalgic encephalomyelitis, under "Diseases of the nervous system." CFS is found in the US ICD-9-CM as 780.71 under "Symptoms, Signs, and Ill-Defined Conditions." Clearly, the two terms are not synonymous. CFS does appear in the alphabetical index of ICD-10 referenced to G93.3 as a non-standard term in common usage. This is because of the CDC's policy of not excluding ME from its nonspecific CFS diagnosis and thereby requiring doctors to misdiagnose all US ME patients who meet the CCC with CFS, ICD-9-CM 780.71. When the CCC is adopted this officially sanctioned misdiagnosis will end, and ME patients will be diagnosed with the disease they actually have, myalgic encephalomyelitis. As the 2011 Myalgic Encephalomyelitis: International  Consensus Criteria states:
The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). [7]
I hope that the Institute of Medicine will now understand the grave mistake it made by agreeing to this contract that cannot be ethically fulfilled, and that the Institute will seek to terminate the contract and recommend the Department of Health and Human Services adopt the Canadian Consensus Criteria as supported by the overwhelming consensus of eminent ME and CFS professionals.
Jerrold Spinhirne, S.E.
An Illinois- licensed structural engineer unable to practice since 1996 due to the neurological disease myalgic encephalomyelitis

2. IOM Report. Gulf War and Health: Treatment for Chronic Multisymptom Illness. Released January 23, 2013.
3. Holmes GP, Kaplan JE, Gantz NM et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med. 1988; 108:387-389.
4. Fukuda K, Straus SE, Hickie I et al. Chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994; 121: 953–9.
5. Acheson, ED, (Attributed). "A new clinical entity?" Editorial. Lancet 1956 (May 26);789-790.
6. Carruthers BM, Jain AK, De Meirleir KL et al. Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. J Chronic Fatigue Syndr 2003; 11: 7–116.
7. Carruthers BM, van de Sande MI, De Meirleir KL et al. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med 2011; 270:327–38.
8. National Collaborating Centre for Primary Care: NICE clinical guideline 53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children London: National Institute for Health and Clinical Excellence; 2007. 
9. Reeves WC, Wagner D, Nisenbaum R et al. Chronic fatigue syndrome–a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19.
10. Sharp MC, Archard LC, Banatvala JE et al. A report – chronic fatigue syndrome: guidelines for research. J R Soc Med 1991; 84: 118–21.
11. Open letter to Health and Human Services Secretary Kathleen Sebelius from 35 ME and CFS experts. Amended to 50 experts on October 25.
12. Ruiz, Rebecca. "Inside The Effort to Define Gulf War Illness" Forbes online, Posted June 28, 2013.
13. Chronic Fatigue Syndrome Advisory Committee Recommendations. October 3-4, 2012 meeting. Accessed online November 10, 2013.
14. National Academies Umbrella Contract Statement of Work. Project Title: Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Undated.
15. Switzer WM, Jia H, Hohn O et al. Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with chronic fatigue syndrome and healthy controls in the United States. Retrovirology 2010 Jul 1;7(1):57.
16. White PD, Goldsmith KA, Johnson AL et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. 2011;377:823-36.
17. Tuller, David. Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale. Published online, November 23, 2011, in Vincent Racaniello's Virology Blog.
18. Carruthers BM, van de Sand MI. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Overview of the Canadian Consensus Document. Published online 2005.

For more information:
– Link to the September 23 announcement from HHS on the IOM contract
– Link to the September 23 letter to Secretary Sebelius from the 35 ME and CFS experts.
     Amended to 50 experts on October 25.
– Link to National Academies Umbrella Contract Statement of Work
– Link to the 2013 IOM Report Gulf War and Health
– Link to Forbes article "Inside The Effort to Define Gulf War Illness"
– Link to USA Today article "Gulf War Illness Advocates Skeptical of Institute Panel"
– Link to FAQ document on this issue
– Link to additional background information
– Link to David Tuller's history of the CDC and CFS
– Link to the 2003 CCC
– Link to the 2011 ME ICC


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