The Domino Effect

Below is "Summary of the HHS IOM Contract Situation" written by Wildaisy Fl. Please feel free to re-post widely.

The CDC, HHS and Kathleen Sebelius have been hiding an epidemic illness that is robbing millions of people of their quality of life - taking away their ability to work and to socialize - and sometimes taking their lives. There is a long ugly history of government mistreatment of people who suffer from this illness.

The illness is Myalgic Encephalomyelitis (M.E.), sometimes incorrectly called "Chronic Fatigue Syndrome (CFS)" and most recently called ME/CFS. This disease afflicts somewhere between 1 and 4 million people in the U.S. and 17 million worldwide (See www.name-us.org/ and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033815/).

This is a very serious and debilitating illness and the economic cost can be staggering. According to a 2004 CDC study, the illness costs every American with CFS about $20,000 a year in lost earnings and productivity. This means ME costs the United States at least $9.1 billion a year, not counting the cost of health care or disability benefits. This economic cost is in addition to the cost in terms of human lives and misery.

NIH reports spending $5 million to $6 million annually on ME/CFS research. This compares with $115-$137 million annually it spends on Multiple Sclerosis, an equally devastating disease. See: http://report.nih.gov/categorical_spending.aspx

Now, in this time of government austerity, when the government has been shut down due to budget constraints, HHS Secretary Kathleen Sebelius' agency has signed a contract estimated to cost at least one million dollars to the Institute of Medicine (IOM) to redefine ME/CFS. This is being done in spite of the fact that 50 (originally 35) well-respected researchers and clinicians, experts in ME/CFS wrote an Open Letter asking Secretary Sebelius not to sign this contract but to use a consensus definition by experts and unanimously recommended by the 50 ME/CFS experts (See: http://www.mecfsforums.com/wiki/Open_Letter_from_ME/CFS_Advocates_to_the_Honorable_Kathleen_Sebelius,_U.S._Secretary_of_Health_and_Human_Services_10/28/2013 )

Ms. Sebelius is choosing to ignore the opinions of experts in order to spend a million dollars to have strangers to this illness define its symptoms. This defies logic. HHS is spending a million dollars for the IOM to do something which has already been done by experts over a period of 20+ years, at no cost to the government!

ME/CFS patients are protesting this spending. Please sign the Petition: https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/)

Generally, the US government works very slowly, but this time they are moving at lightening speed, even though the government has been shut down.

This decision will affect every M.E. patient, regardless of where they live. If the USA adopts a "garbage" definition for M.E. like the IOM definition for "Chronic Multisymptom Illness," formerly called "Gulf War Illness," that will start the use of a psychological definition for M.E. which will spread to other countries and have a "domino effect" on the diagnosis and treatment of M.E. all over the world.

The time to stop this is now! Everyone can help to stop this IOM contract!

You can see more detailed information here:

http://www.mecfsforums.com/wiki/2013_Contract_between_HHS_and_IOM

Magnesium: An Essential Supplement for ME/CFS

This article was originally published on ProHealth.

By Erica Verrillo

Found abundantly in leafy greens, fish, nuts, seeds,and dried fruits, magnesium is the unsung hero of nearly all our body's metabolic processes. It is a cofactor in over 300 enzyme systems, and performs vital roles in regulating blood glucose levels, protein synthesis, blood pressure, and muscle and nerve function. Along with potassium, calcium and sodium, it is classed as one of the seven minerals essential for the functioning of the human body. Without it, we would die. 

According to the USDA, fully 68% of Americans do not consume the daily recommended intake for magnesium^.1 Independent researchers place this figure even higher, at 75% - 80%. ²  (Keep in mind that the daily recommended intake is not the optimal amount a person needs to consume in order to maintain a healthy, fully functioning body, but the minimal amount one needs in order to avoid illness.)

Because magnesium is essential for relaying nervous system impulses and for the metabolism of calcium

and for the metabolism of calcium and potassium,the effects of magnesium deficiency run the gamut, from growth retardation to heart failure, from anorexia to learning disabilities and personality changes, from weakness to muscle pain, and, of course, fatigue. Even at the daily recommended intake, symptoms of deficiency can appear. In 1990, Kubena et al. listed the effects of chronic marginal intakes of magnesium, including “abnormalities in reproduction, growth, and development and disorders of neuromuscular, cardiovascular, renal, and immune function." 9 Considering the fact that roughly three-quarters of Americans are functionally deficient in magnesium, we would expect to see at least mild deficiency symptoms in the majority of our population. 

Given both its widespread systemic effects as well as its under-consumption by most of the population, it is not surprising that magnesium has been used as a treatment for such diverse conditions as diabetes, cardiac disorders, migraines, asthma, and major depression. ^3-7

Magnesium Deficiency in ME/CFS

In early 1991, I.M. Cox, M.J. Campbell, and D. Dowson published a preliminary study on magnesium levels in CFS/ME patients. All 22 patients studied had reduced levels of serum magnesium. ¹⁰ (A reduced level of serum magnesium is cause for alarm, given that the vast majority of magnesium is found in tissue, not blood.) The researchers followed up their findings with a randomized clinical study in which 15 of the patients received intramuscular injections of magnesium sulfate every week for six weeks and 17 received a placebo. Of the 15 patients receiving magnesium, 12 reported improvement in symptoms. 

A subsequent article by Dr. Mildred Seelig observed an overlap with ME/CFS and many of the symptoms of latent tetany syndrome, a medical condition resulting from magnesium deficiency leading to sleep abnormalities, vertigo, mitral valve prolapse, headaches, and anxiety. She proposed that ME/CFS patients would improve with the treatment used for LTS, namely magnesium.⁸ Dr. Seelig concluded that “The evidence that Mg deficiency causes a variety of both humoral and cellular defense disturbances, among which are several that have been identified in CFS and FM, is a reason to suspect that either Mg deficiency or its abnormal utilization might be a pathogenic factor in CFS.” 

Dr. Martin Pall's work supports Dr. Seelig's conclusion. Dr. Pall speculated that, given the likelihood that people with CFS/ME are marginally deficient in magnesium before falling ill, magnesium deficiency may actually contribute to the pathogenesis of the illness. In his book,Explaining “Unexplained Illnesses,” Dr. Martin Pall presents a compelling argument implicating oxidative stress in the etiology of CFS/ME. ¹¹ An important part of the cycle of oxidative stress typical of multisystem illnesses like CFS/ME, FM and Gulf War Syndrome is the chronic excitability of NMDA receptors. This over-excitability results in a hyperactive nervous system – along with cell damage, inflammation, and lowered production of ATP. Magnesium is one of the principal inhibitors of NMDA activity, which makes it a valuable treatment for any illness involving chronic oxidative stress.

In addition to its contribution to oxidative stress, Dr. Myhill believes that low magnesium levels in CFS/ME patients is a symptom of mitochondrial failure. When mitochondria fail, calcium leaks into cells and magnesium leaks out. According to Dr. Myhill, this leakage explains why it is useless to test serum levels of magnesium. As she puts it, “Serum levels are maintained at the expense of intracellular levels. If serum levels change this causes heart irregularities and so the body maintains serum levels at all cost. It will drain magnesium from inside cells and indeed from bone in order to achieve this.” ¹² Dr. Myhill's explanation not only accounts for why serum levels of magnesium are inconsistent in CFS/ME, but why magnesium supplementation is so effective.

Treating ME/CFS With Magnesium

Although nearly every CFS/ME physician includes either injectable or oral magnesium as part of their protocol, there are relatively few studies measuring the overall effects of magnesium supplementation. The paucity of studies may be due to the fact that body stores of magnesium cannot be measured via a blood test. However, one of the few formal studies (Manuel y Keenoy et al.) found that supplementation with magnesium led to an improvement in magnesium body stores, as well as serum vitamin E levels in ME/CFS patients.¹³ The results of that study indicate that magnesium supplementation not only leads to increased body stores, but may reduce oxidative stress (as indicated by the increase in vitamin E levels). 

What Form to Take?

Because oral magnesium is difficult to absorb, the forms most frequently recommended are magnesium citrate and magnesium glycinate. Magnesium citrate dissolves in water, which makes it more bioavailable than most other forms of magnesium (such as sulfate or oxide, both of which are inorganic and poorly absorbed ¹⁴).
Dr. Paul Cheney has observed that magnesium glycinate causes the least intestinal upset and is the most easily absorbed.¹⁵ The usual recommended dosage is 200 to 400 mg/day taken with food, although CFS/ME patients are cautioned to start with a smaller dose and increase it gradually. Intramuscular injections of 1 cc of magnesium sulfate (50%) or magnesium chloride can be administered once or twice a week. Because of magnesium's effect on heart function, the first injection should be performed in a physician's office. The main drawback of injected magnesium is that the injections are painful. The simultaneous administration of vitamin B12 or lidocaine helps relieve the pain of the injection. Because magnesium is a cathartic, high doses can cause diarrhea. In patients prone to gastrointestinal upset, a low dose is normally recommended.

Benefits

Most people with ME/CFS who take magnesium, whether oral or injected, report increased stamina and energy. Many include better sleep as an additional benefit (most likely due to magnesium's muscle-relaxing effects). 

MAGNESIUM IN A NUTSHELL

PROS:

• Increases energy
• Decreases pain
• Helps insomnia
• Reduces oxidative stress
• Anti-inflammatory
• Immune system regulator
• Inexpensive
• Oral forms are effective

CONS:

• A high dose may cause diarrhea

FURTHER READING

Excellent summary of magnesium's effects on the body from the Linus Pauling Institute. 
USDA statistics on nutrient consumption by state and nationally.

References

1. USDA Agricultural Research Service, “Percentage of individuals meeting DRI - Magnesium - 32 per cent”  
2. Ford ES, Mokdad AH. Dietary magnesium intake in a national sample of U.S. adults. J Nutr 2003;133: 2879-2882. 
3. Rude RK. Magnesium deficiency and diabetes mellitus: Causes and effects. Postgrad Med 1992; 92: 222-4. 
4. Iseri LT, Freed J, Bures AR. Magnesium deficiency and cardiac disorders. Am J Med 1975;58:837-46. 
5. Mauskop A, Altura BM.  Role of magnesium in the pathogenesis and treatment of migraines. Clin Neurosci. 1998;5(1):24-7. 
6. Marcela Davalos Bichara and Ran D. Goldman, MD. Magnesium for treatment of asthma in children. Canadian Family Physician. September 2009 vol. 55no. 9 887-889.
7. George A. Eby , Karen L. Eby. Rapid recovery from major depression using magnesium treatment. Medical Hypotheses(2006)
8. Seelig, Mildred MD, MPH. “Review and Hypothesis: Might Patients with the Chronic Fatigue Syndrome Have Latent Tetany of Magnesium Deficiency.” Journal of Chronic Fatigue Syndrome, Vol. 4(2) 1998
9. Kubena KS, Durlach J. “Historical review of the effects of marginal intake of magnesium in chronic experimental magnesium deficiency.” Magnes Res.1990 Sep;3(3):219-26. 
10. Cox IM, Campbell MJ, Dowson D. “Red blood cell magnesium and chronic fatigue syndrome.” Lancet. 1991 Mar 30;337(8744):757-60. 
11. Pall, Martin. Explaining “Unexplained Illnesses.” CRC Press, 2007.
12. Dr. Myhill discusses magnesium deficiency and treatment in CFS/ME patients. DrMyhill.co. 
13. Manuel y Keenoy, B, Moorkens, G, Vertommen, J, Noe, M, Neve, J, and De Leeuw, I. “Magnesium status and parameters of the oxidant-antioxidant balance in patients with chronic fatigue: effects of supplementation with magnesium.” J Am Coll Nutr. 2000 Jun;19(3):374-82.
14. Lindberg JS, Zobitz MM, Poindexter JR, Pak CY. “Magnesium bioavailability from magnesium citrate and magnesium oxide.” J Am Coll Nutr. 1990 Feb;9(1):48-55. 
15. Carol Sieverling "Dr. Cheney's Basic Treatment Plan for Chronic Fatigue Syndrome.” ProHealth, 10/19/01. 

What Really Killed Paul Hancock?

On October 8th, a 53-year old man diagnosed with CFS was found dead in his home. The coroner's ruling was "natural causes."

Whenever I read an article like this (see below), I have to wonder what is natural about dying at age 53 of heart failure and malnutrition? Obviously, there was something terribly wrong with Mr. Hancock, something quite unnatural.

There is no point speculating about this tragedy, because there is no information about what actually led to Mr. Hancock's death. But, one thing we do know from his diagnosis is that he very well may have had an undiagnosed heart condition.

Or parasites, or diabetes, or any number of tropical ailments, or a rare form of leukemia, or MS, or  ....

Fill in the blank. The definition of CFS is so vague, and the medical community so uninterested in doing more than the bare minimum for its patients, that Mr. Hancock could have had anything.

We know that people who have what we are now calling ME/CFS tend to die of heart failure at no greater rate than the general population, but they are doing so roughly 20 years earlier. There is enough research on cardiac anomalies (the Peckerman studies) in ME/CFS that we can reasonably attribute this early heart failure in our population to diastolic dysfunction. And we can probably attribute malnutrition to the gut dysbiosis and malabsorption that we know affects more than a third of us. We know that all of us run these risks simply from having a chronic, untreated illness year after year.

But what we will never, ever know is what really killed Paul Hancock - because nobody is looking.
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A Wood Green man died on his birthday from natural causes, an inquest has ruled.

Haringey Independent, Tuesday October 8, 2013 (London, UK)

Paul Hancock, of Clyde Road, Wood Green, died on February 26 this year, the same day as his 53rd birthday.

A post mortem suggested he died of a heart failure and malnutrition at his Wood Green home.

Mr Hancock, who was born in Brazil, was a trainee psychotherapist but had been out of work since 1998 after being diagnosed with chronic fatigue syndrome (CFS).

The inquest, at Barnet Coroners Court in Wood Lane, also heard yesterday that Mr Hancock had not been taking any anti-depressants nor had he shown any suicide intentions according to a statement from his psychiatrist Massimo Ricoh.

Mr Ricoh, who had been treating Mr Hancock since May 19, 2006, wrote in a statement: “The last meeting we had was on May 30, 2012, and he looked very pale. We arranged for another appointment on November 20, 2012, but Mr Hancock cancelled. He never had a suicidal intent.”

PC Winston Letman attended the scene at 4.10pm on February 26, after a neighbour had collected a parcel for Mr Hancock and was concerned that lights were on in his home but there was no answer at the door. The PC went on to disclose that there was nothing suspicious about the death.

Coroner Andrew Walker concluded that Mr Hancock had died of natural causes.

180,000 Australians with ME/CFS

Kathy Sinnott and her daughter Miriam, age 24.
Source: News Limited.

This article appeared in the Herald Sun (Australia). 

THERE is the physical and mental pain, and it hurts.

There is no research into a cure, and that hurts too.

There are many doctors who don't believe chronic fatigue exists - and that hurts the most.


Sunshine woman Kathy Sinnott and her daughters Alice and Miriam have myalgic encephalomyelitis, commonly known as chronic fatigue syndrome. Alice is housebound, a sharp student reduced to days and days in bed. Miriam can work part time and study part time and rest a lot. Kathy has ups and downs, while looking after herself and her daughters.

They are just three of an estimated 180,000 Australians with chronic fatigue.

The complicated nature of the syndrome means there is no scientific consensus on its causes and the best way to treat it. That means no one is even researching how to fix it.

"There are so many people who are desperate for help. It wrecks so many lives," Miriam said. "It's even worse to know there's no one even trying to find a cure. "We don't even have hope."

Miriam said a lot of doctors did not believe chronic fatigue existed, which came as a blow to people whose lives had been put on hold.

"I had all these hopes and dreams … and they're just brushing aside how much that hurts."

Alice, 28, was too sick to speak or be photographed. At 18 she got into Melbourne University but could not continue with her ­studies as her symptoms hit harder. An attempt at doing a childcare course at TAFE also ended.

Kathy worked as a teacher while raising her children and would go straight to bed when she got home. "It's only since Alice was diagnosed I realised I could tick so many of the same boxes," she said.

Having two daughters with chronic fatigue is not what Kathy wanted for them when she dreamt of their adult lives.

"It's certainly not what I hoped," Kathy said. "I'd love to get Alice to the stage where she can live a normal life, even if its part time work or voluntary work.

Without the hope of a cure, the Sinnott women are doing their best to muddle through. Miriam said she worried about what would happen once her parents got older and needed care themselves.

Chronic Fatigue Syndrome Patients Feel Increasingly Isolated

Source: Female First, 20 September 2013

By Taryn Davies

Sufferers of Chronic Fatigue Syndrome (CFS) are feeling increasingly isolated due to their family and friends’ lack of understanding of their condition, a study has revealed.

The study, carried out by talkhealth, one of the UK’s leading online social Health communities, revealed that a massive 70 per cent of CFS sufferers felt that their family and friends did not understand their condition and appreciate the effect it had on their lives.

Furthermore, nearly half of the respondents felt that their condition had not been taken seriously by a medical professional, adding to their feelings of isolation.

The study showed that the top five most common symptoms experienced by CFS sufferers are tiredness after exertion, un-refreshing sleep, muscle and joint pain, chronic physical exhaustion and cognitive difficulties such as memory loss.

Dr Jon Rees, a spokesperson for talkhealth comments:

"Chronic fatigue syndrome is something I see surprisingly often as a GP. It is an extremely frustrating condition not only for patients who often feel that their problems are not taken seriously but also for relatives and friends who may struggle to understand a condition that has no outward signs of physical illness. Patients may also experience cynicism from some people in the medical profession including doctors, who do not recognise CFS as a true medical condition. However GPs are increasingly realising the true impact of the symptoms and are better equipped to offer support and onward referral to specialist services."

Dr Rees continues:

"It is vital that patients receive adequate support as CFS can have a huge impact on their quality of life. They must be fully assessed for any underlying cause that can be treated, such as underactive thyroid or coeliac disease but if no cause can be identified and the symptoms are significant, referral to a specialist chronic fatigue service can often be useful."

Chronic fatigue syndrome (CFS), affecting 250,000 people in the UK, causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest.

The condition is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms.

Misconceptions about the Physicians' Letter and the IOM Contract

Note: The petition in support of the Physicians' Letter to HHS is HERE. The petition in support of adopting the CCC is HERE. You can sign the petition to stop the IOM contract HERE. Instructions for writing your representative are HERE. 

Although the federal government is shut down, the Internet is working. Even if your representative does not get back to you, the emails are still being read by their aides.

By Mary Dimmock

As most of you know, two significant events for the ME community took place a few weeks ago. 

We had a very positive, even historic, leap forward when 35 of the leading ME researchers and clinicians sent an open letter to HHS Secretary Sebelius asking HHS to adopt the CCC (Canadian Consensus Criteria) as the sole case definition for ME/CFS in all its activities, and asking HHS to not pursue a contract with the IOM.

This is the first time in the history of this disease that a group of ME/CFS experts of this size has come together to publicly recommend a case definition to a U.S. agency. 

With any other disease this would be the end of the discussion. Unfortunately, ME/CFS is not like any other disease. Historically, HHS has not only ignored our disease experts, but has made every effort to dismiss the science about the disease. 

On the same day that the physicians sent their historic letter to Secretary Sebelius (Sept 23), HHS announced that despite strenuous opposition from the patient community, it had entered into a contract with the IOM to develop “clinical diagnostic criteria” (i.e., a clinical case definition) for ME/CFS. This announcement generated as much confusion as it did concern. 

Was the federal government's willingness to devise a new case definition going to work for or against the interests of the ME/CFS community? And, if it is not going to help us, can anything be done?

This posting will attempt to clear up some of the misconceptions that have arisen and clarify why it is critical that the ME community take the following steps:

• Give its strongest support to the expert researcher/clinician letter
• Demand that HHS adopt the CCC, as the experts have urged
• Demand that HHS cease all efforts to undo the work of the experts by using non-experts to redefine the disease. Specifically, HHS needs to cancel the IOM contract and the NIH’s so-called “Evidence-Based Workshop.”

Thirty-five leading ME/CFS researchers and clinicians have taken the bold move of announcing their consensus on the CCC. This is a great opportunity for the patients to unite behind the CCC and force HHS to accept it, through Congressional action or any other political means necessary. Once we have the CCC in place and adopted by HHS, researchers can use it to focus their studies only on patients who truly have our disease. This will allow them to learn more about the pathophysiology of the disease, discover and validate biomarkers, define subtypes, and test treatments.  

This will pave the way for an even better case definition in the future.  In addition, we will have set an important precedent – only those with substantial expertise in this disease should have any role in creating case definitions.

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Misconceptions about the Physicians' Letter and the IOM Contract

Misconception #1: Now that the IOM contract has been signed, it will be impossible to get HHS to cancel it.

Reality:

The fact that the contract has already been signed means very little – it can still be canceled.

First, government contracts typically include clauses that allow the government to cancel very easily. And in this case, HHS has an excellent reason to cancel. The primary purpose of the contract was to engage the IOM to develop a consensus case definition, but the letter from the 35 experts has already achieved this. The burden is now on HHS to argue why it still intends to spend roughly $1 million to hire non-experts to achieve a task which the leading 35 experts have just accomplished for free. While HHS appear determined to move forward with the IOM contract, this argument will likely hold much more weight with Congress, especially in this time of budget shortages. Congress is where we need to go to make our case.

Misconception #2: The best we can do is to try to influence IOM to get good representatives on its committee and communicate the patient perspective to IOM.

Reality: 

Lobbying for a better IOM process simply will not work.

No matter how much patients lobby HHS, it has become clear that HHS’s intention is to develop a very broad case definition, and details of the IOM statement of work reinforce that idea. The IOM statement of work for ME has been set up to look at not only ME but also “CFS,” which includes not just the vague Fukuda definition, but the even vaguer Oxford definition. Given the broad range of illnesses encompassed by both the Fukuda and Oxford definitions of “CFS” it is more than likely that the definition of ME will follow suit.

HHS has repeatedly stated its intent to engage ME/CFS non-experts in creating the definition. HHS’ statement of work does not require that all panel members – or even a majority –have experience or expertise with ME. Under the statement of work, it’s possible that most of the panel members could have no knowledge at all of this disease – and worse, could believe outdated theories that the disease is psychosomatic or can be treated with CBT and exercise.

IOM may make a few concessions in response to patient pressure in an attempt to pacify us. However, they will have the power to ensure that any changes they make to the process will not change the outcome. For example, if they add legitimate experts to the committee, they will ensure that there are not enough of them on the committee to prevail in a vote. 

Misconception #3: The CCC isn’t perfect, so we should push for it to be further refined before it is adopted, either by our own researchers or through one of the mechanisms HHS has set up (the IOM contract and the NIH workshop).

Reality: 

Nothing is perfect. But the CCC  is not only a proven case definition that will move research forward by ensuring that it focuses only on patients who truly have our disease, it has been in use for a decade and found to be more accurate for diagnosis than any of the other ME/CFS definitions. 

Equally important, if we don’t press for immediate adoption of the CCC, we leave the door open for HHS to move in and “define away” our disease. The case definition HHS wants to adopt will be so broad that it will encompass everyone with excessive “fatigue” and turn our disease into just a random collection of “medically unexplained symptoms” that would be treated by CBT and similar therapies. (If you want a preview of this approach, see the January 2013 IOM report on treatments for Gulf War Illness.)

Misconception #4: The IOM process may be able to improve on the CCC because the Statement of Work calls for the panel to make recommendations about disease subgroups.

Reality: 

The idea that a committee composed primarily of non-ME/CFS experts would be able to improve on the CCC is farfetched.

They will not have the knowledge to do that – instead, they will move us backward. But even if the panel did have the expertise to define subgroups, the panel’s goal is not to define subgroups within the CCC-defined population. The panel’s charge is to create a case definition for “CFS.” This means that the “subgroups” are likely to include people with idiopathic fatigue or similar “medically unexplained” symptoms – all wrapped under the umbrella of “Chronic Multi-Symptom Illness” or another vague classification. 

A clear indicator of this intent is that the IOM statement of work refers to “subgroups with substantial disability.” Since we know that virtually everyone with ME has “substantial disability,” it is clear that the intent is to include populations who do not actually have our disease.

Misconception #5: The broader medical community will not adopt the CCC based just on the researcher/clinician letter. The only way the broader medical community will accept a case definition for ME/CFS is if they have a role in developing it. 

Reality: 

HHS has been using this excuse for some time to justify engaging non-experts in developing a new case definition. It is, in a word, hogwash.

The Fukuda definition was developed by a small group convened by the CDC in 1994. Once the CDC and NIH adopted it, put it up on their websites, and included it in educational materials, the medical community adopted it wholeheartedly. It is now on hundreds – if not thousands – of medical websites around the country. The barrier to acceptance of the CCC is not the broader medical community – it is HHS. This is why we need political action – Congressional action – to force HHS to accept the CCC. Once HHS accepts the CCC and begins including it in its public information materials, the medical community will follow.

Misconception #6: It will be helpful to have the IOM develop a definition, because the IOM is so prestigious that the medical community will be much more likely to accept it.

Reality:

The IOM is prestigious, but that does not mean that the IOM is experienced in developing definitions.

Dr. Kenneth Shine, a former president of IOM, and the chair of the current Chronic Multi-symptom Illness IOM panel, said that he could not remember the last time the IOM was asked to develop a case definition. 

More important, there is every reason to believe that the IOM will come up with a very bad definition. A bad case definition with the IOM “seal of approval” would set us back for decades.

Misconception #7: The researcher and clinician letter does not include a plan for next steps -- in particular, how to educate the broader medical community about the CCC.

Reality:

The researcher/clinician letter actually does include two very important next steps.

In addition to urging HHS to abandon efforts to engage the IOM in developing a case definition, the letter strongly urges HHS to use “the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease.” This means adopting the CCC as the case definition for NIH grant proposals, using it in CDC studies, and also incorporating it into all of HHS’s public and provider education materials. 

Since most other public and provider education about ME/CFS is derived from material that HHS publishes, this would be an enormous step forward in education and promotion of this case definition. When the CDC started including Fukuda in its educational materials, it was broadly disseminated and can now be found on almost every ME/CFS- related website in the country. When HHS adopts the CCC, as the experts urge, and actively supports its dissemination, the same thing will happen with the CCC.

Misconception #8 (THE BIGGEST OF ALL!): Even though HHS has been hostile to this disease and working against our interests for decades, we still should try our best to educate them and work with them. We don’t have the political strength to force them to change. 

Reality:

Who says we don't have the political strength?

If AIDS activists had taken that attitude, would we have protease inhibitors today? If Rosa Parks had taken that attitude, would we have the Civil Rights Act?

For thirty years, we have been trying to work with HHS. And where has it gotten us? Intimidation of CFSAC members, no approved treatments, and HHS representatives who are still arguing this disease is one of a spectrum of “medically unexplained fatiguing illnesses.” 

You don’t win political battles by trying to cozy up to your political enemies and hope you can convince them to be nicer to you. You win by fighting the political battle that needs to be fought – building alliances, going to Congress, going to the press – and NOT GIVING UP until you win.

Now more than ever, the ME/CFS community must unite and stand up to HHS's ongoing campaign to ignore people with ME/CFS. And we have never had a better opportunity than now.

• We now have a clear demonstration – in writing - that at least 35 leading ME/CFS researchers and clinicians are on our side. 
• We now have indisputable scientific evidence of many of the biological abnormalities in this disease – CPET test/retest results, low natural killer cell function, and many more. We have scientists all over the country and world, from prestigious institutions like Stanford and Columbia, who understand how severe this disease really is.
• We have GWI advocates – who are being subjected to similar treatment by the VA and who are outraged about it – as potential allies. 
• We have sympathetic Members of Congress.
• We have hundreds of thousands of patients who can write letters to Congress and sign petitions, not to mention caregivers and loved ones.

So what are we waiting for? How many more decades will we remain bedridden or semi-bedridden, and continue to meet with Beth Unger to “educate” her, while she continues to do her best to spread misinformation about our disease to the medical community and the public? How many more decades will we continue to give well-informed, articulate, and moving testimony to CFSAC, to the FDA, only to have it ignored when it comes to real action? When are we going to unite and start really fighting to get our lives back?

The time is NOW! As Tom Hennessey said, NO MAS! 

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Act now! This link provides instructions for contacting Congress and the White House along with links to petitions you can sign.

Additional background

Additional background on the ME/CFS IOM contract. Includes history of the IOM contract, information on the IOM work for GWI and a summary of key issues with the ME/CFS IOM Statement of Work.

September 23, 2013 letter from the ME/CFS Researchers and Clinicians to Secretary Sebelius

September 23, 2013 announcement by HHS on plans for IOM to start work on clinical diagnostic criteria in September.

HHS’ Statement of Work for the IOM initiative to define new clinical criteria for ME/CFS

IOM Initiative to define Gulf War Illness: “Development of a Case Definition for Chronic Multisymptom Illness”

IOM Report on treatments for Gulf War Illness: “Gulf War and Health: Treatment of Chronic Multisymptom Illness”

Forbes. “Inside the effort to define Gulf War Illness” 6/28/2013

Clearing the Air, or Breaking Wind? A Comment on Suzanne Vernon

Note: You can sign the petition in support of the doctors' letter HERE. You can sign the petition to support adoption of the CCC HERE. You can sign the petition to rescind the IOM contract HERE.

Yesterday, Suzanne Vernon published a post on Research First (see full text below) in which she attempted to respond to accusations that the CFIDS Association of America (CAA) had pressured the signatories of the HHS doctors' letter into withdrawing their support for the immediate adoption of the Canadian Consensus Criteria and rejection of the IOM contract. Although the email sent by the CAA did not directly ask the doctors to rescind their signatures, it was clear that asking if they "still agreed" was intended to instill doubt. (Not to mention, why send an email to all of the signatories, unless the purpose was to get them to change their minds?)

In at least one case, the email worked. Lucinda Bateman withdrew her name from the letter, stating that "This is an opportunity to build a strong federal base of support from NIH/IOM." Echoing that sentiment, or perhaps inspiring it, Vernon says, "We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress."

What is lacking from these pronouncements of faith in the IOM's ability to validate and fund future research "based on clear identification of gaps in our knowledge, review of our current evidence base, and creative thinking about how to move forward" is any grasp of reality.

Philosopher George Santayana is reputed to have said, "Those who cannot learn from history are doomed to repeat it." History, in the case of ME/CFS, has proven that our federal agencies (HHS, CDC, NIH) have absolutely no interest in accurately defining the illness, funding research, or including patients in decision-making processes - much less "creative thinking about how to move forward."

Let's take a brief look at the history of how federal agencies have dealt with ME/CFS:

• The CDC has never tried to come up with an accurate case definition. The current CDC case definition ("Fukuda") has been critiqued for decades by all of the reputable ME/CFS specialists and researchers as being too vague. This vagueness was intentional. The Fukuda definition was designed to stymie the ability of physicians to correctly diagnose the illness, ultimately leading to under-reporting. This was a boon to insurance companies, which did not want to pay for yet another expensive epidemic (i.e. AIDS). It was not until advocates began pressuring HHS to adopt the Canadian Consensus Criteria - which were developed by independent researchers and ME/CFS doctors - that HHS responded. Their response was to ignore the experts, and assign the case definition to people who not only know nothing about the illness, but have a vested interest making sure the definition stays vague and broad enough to classify ME/CFS as a form of "fatigue."
• The NIH has never funded this illness. It is well known that the funds awarded to studying "CFS" in the 1980s were diverted to measles, alcoholism and other "fatiguing" conditions. That trend has continued. In 2009, nothing was awarded for research into "CFS." In 2010, again - not one penny. In 2011, $6 million was awarded, which, while better than nothing, did not even come close to researching an illness that affects more people than AIDS ($3 billion), lung cancer ($233 million) and breast cancer ($800 million) combined. Does the CAA really believe that because of the IOM contract the NIH is going to turn around and award $4 billion to research on ME/CFS? (I can hear the laughter, but based on prevalence, $4 billion is what we should get.)
• The DHHS has never included patients in their decisions regarding ME/CFS. Patients were not consulted to formulate the Fukuda definition. We were not consulted when awarding funds for research. We certainly weren't consulted about the IOM contract. The idea that we are now going to be "at the table" is simply ludicrous. I suspect that by making this claim Vernon is referring to her own dinner invitation. In spite of the fact that Vernon's expertise with the illness in no way compares to that of any of the people who stood by their signatures, she will be part of the team that determines our fate. Why? For one thing, her previous work with the CDC not only supported the Fukuda definition (Chronic Fatigue Syndrome – A clinically empirical approach to its definition and study), but advocated the use of questionnaires for diagnosis, rather than objective measurements. It is not at all surprising that, given her predilections, Vernon does not consider PEM (post-exertional malaise) as a hallmark symptom of ME/CFS. (She also believes that if we slept more we would be "less tired.") With Vernon on the IOM committee we can expect no less than a definition that essentially eliminates ME/CFS as a disease entity.

Why on earth would anybody - given this 30-year history - think that the IOM (an organization that has already stated it believes ME/CFS is a subcategory of "fatiguing illnesses") will open up federal doors? Why would funding suddenly flow for "fatigue"? And why would research be more valid with cohorts composed of people with "chronic fatigue"?

But, perhaps most important of all, why did the CAA use its clout as a national CFIDS organization to pressure doctors into supporting the IOM contract, an arrangement that will benefit nobody in the ME/CFS community?

Does the CAA speak for the ME/CFS community, or is it simply speaking for itself?

(Note: Please read Dr. Mikovits' response to the CAA's request that she withdraw her signature. It's enlightening.)

__________________________________________________________________

Clearing the Air

By Suzanne Vernon

As the conversation concerning the HHS/IOM contract continues, many advocates are weighing in. Over the past several days we’ve received several questions about various points in the discussion so we wanted to address them.

First, I sent an email to my colleagues who signed the letter to Secretary Sebelius asking to adopt the Canadian Consensus Criteria and cancel the IOM contract. There is speculation that I asked them to rescind their signature. I did not ask anyone to rescind their signature or change their mind. I reached out to those I had email addresses for (29 signatories), asking if they still agreed with the letter given the IOM contract was awarded and more information on the scope of work had been provided. I heard from about half of the signatories. Several stood by their signature indicating the money for the contract should go to research

Others didn’t feel an IOM committee would do a good job. And yet others were hopeful that the IOM contract would be productive and effective. It was important to hear this because we value their expertise and opinions. Many look to us for insight, opinion and information. We try to understand all sides of an issue so we can provide the most balanced information and make the most informed decisions.

Many of my fellow advocates have asked if I am benefiting financially from my participation on the IOM committee for development of a case definition for chronic multisymptom illness. I am not. Committee member air travel and lodging are paid for with the IOM contract – which was awarded to the IOM by the Veterans Administration. Committee members receive a per diem to cover costs incurred during travel, but all work is voluntary. Outside of the meetings we have a lot of reading and research to do to accomplish our charge. Like in ME/CFS, there has been outstanding work and research on Gulf War Illness and there are significant gaps in knowledge. No one on the committee takes this responsibility lightly. We have 3 more months and two more committee meetings to complete our tasks.

Several individuals have speculated that I am on this committee purely because my brother has Gulf War Illness (my brother is happy that I was nominated and he is hopeful for our outcome), but that is not why. I was nominated for the committee because of my work and research on ME/CFS. My brother relates to ME/CFS patients because as he and many of you know, Gulf War Illness and ME/CFS have many clinical similarities. For those of you that haven’t yet, please read his personal story: http://www.cfids.org/cfidslink/2010/020304.asp

Some that are deeply opposed to the IOM contract to develop a clinical case definition for ME/CFS do not understand why we are in the discussion if we are an organization focused on research. It is precisely because we are focused on research that case definition is important to us. A physician or healthcare provider can only diagnose ME/CFS after thorough clinical evaluation. It is critically important that this clinical approach to diagnosing ME/CFS be defined and standardized for use by all physicians and providers. The diagnostic criteria is essential to advance research because it provides us with the disease-defining concepts – the core signs and symptoms – needed to identify and validate biomarkers and to provide evidence of treatment benefit.

While we understand the concerns over the contract with the IOM: fears that the right people will not be on the committee, leading to a lack of commitment and faulty results, we believe it is in the patients best interest to continue to foster a positive working relationship with HHS and IOM. No single organization can solve ME/CFS on its own. We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress. We can only do that if we are at the table.

We all have a lot of urgent work to do and we all can continue to contribute and help our community. There is plenty of work that needs to be done – more than enough to go around. We must galvanize around ME/CFS in order to conquer it.

Vote for May 12th Awareness - Help Them Win $100,000 for ME/CFS

Source: Phoenix Rising, October 2, 2013, by Firestormm

It will cost you nothing more than an online vote to help see the National ME/FM Action Network enter the second round of the Aviva community competition to win $100,000. Voting in this round closes 14th October and you can vote every single day until then – so please join us and cast your vote now!

National ME FM Action Network - Aviva 2013

Join us in sending the National ME/FM Action Network of Canada through to the second round of the Aviva Community Fund competition so that they can win $100,000 to be used to help raise awareness on 12th May 2014.

This is the first of three qualifying rounds of the online competition. At the time of writing we have 12 days left until all the votes are totted up and the National ME/FM Action Network will move hopefully a little closer to winning $100,000.

Instructions:

Go here to register.

Click the button, Vote Now.

Complete the simple voting registration form (the one on the left) with your email address and provide a password.

Or, you can vote via your Facebook account (the blue button above), and simply skip the permission request to access your profile etc.

You only need to register the first time and you don’t need a Facebook account to vote in this competition.

You can vote every single day (using the same link will redirect you to the right place – or click the pictures above and below which are also linked to the voting page) and you can ask to be reminded to vote automatically.

Voting for the first round ends on 14th October at which time we’ll aim to publish another article when they are successfully through to the next round.

But your support is needed. So please help give a fighting chance for the National ME/FM Action Network of Canada to win $100,000 so that they can ensure May 12th 2014 begins a spectacular year for raising awareness of our disease and bringing much needed attention to those like us who are most affected by it.

The Action Network has already made it into the top ten in its size category of this round and if it maintains that position and is then able to repeat its performance in subsequent qualifying rounds, it will go through to the semi-finals in December. All finalists in each round win $5,000. The leaderboard can be found here.

Please consider sharing this article on your own Facebook page to help bring greater awareness to the competition. Use our share link (the green pop-out located on our Home page version of this article), to ‘like’ on Facebook, to ‘tweet’ or to recommend the article on other applications.

The National ME/FM Action Network of Canada

The Action Network’s contest statement is as follows:

“Our dream begins with awareness. May 12th Awareness Day is a chance for the 750,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard! These illnesses are real; the people are real; and they need help NOW!   

ME/CFS and FM are chronic and severely disabling illnesses. They are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities.   

Dr Nancy Klimas, an expert in both ME/CFS and AIDS, was quoted as saying “A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS. If I had to choose between the two illnesses I would rather have H.I.V.”

These illnesses do not discriminate. All races, men and women, rich and poor, adults and children can be afflicted. It is devastating when a child is forced to cope with such a disabling illness.

We are on a mission to bring awareness in Canada for this community of people living with these illnesses and to set the stage for fundraising for research and more physician education.   To date our volunteer efforts have been handcuffed as not only is our community very disabled, many are in financial distress. The illness limits our ability to raise the substantial amounts required to mount a large scale awareness event and to fund the desperately needed research. It is the dream of our community to erase stigma and finally be taken seriously by friends, family, researchers, government and those in our local communities.

This contest gives us a chance to fund a nation wide awareness campaign for 2014, the 22nd Anniversary of May 12th Awareness Day.  It will also define Canada as a world leader in raising awareness as this day is also an international event. It will not only benefit 750,000 Canadians, but it will indirectly benefit the 20 million people that suffer worldwide.

We will use the funds to hold events in as many communities across Canada as possible which will lay the foundation for a strong network of organizations in Canada and future fund raising for education and research.  We’ll connect with every MP and provincial/territorial representative in Canada and have May 12th proclaimed in cities nationwide. We’ll sport t-shirts, carry signs and have engaging speakers in as many communities as possible. Each event will have its own venue but will share elements common to all. In order to unite the larger community across Canada we’ll also advertise in national and local papers, and, if funding permits, on TV and radio. As education is so critical, we will also target physicians, medical students and other health professionals with our letters and/or advertising.  Brochures and a white board medicine video are planned.

We believe with awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

Aviva’s gift will help to unite our national and local communities and make a difference to the lives of many Canadians. It will give us credibility in our quest for treatment and a cure and hope for a better tomorrow.”

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

Actress Martine McCutcheon's 7-year Battle With ME/CFS

British actress/singer Martine McCutcheon, star of Love, Actually, reveals that her long battle with ME/CFS and depression has put an end to her career and driven her into bankruptcy. Martine McCutcheon won a Laurence Olivier Award for her portrayal of Eliza Doolittle in My Fair Lady, and her pop single, Perfect Moment, reached No. 1 in five countries. Prior to Love, Actually, she was best known for her role as Tiffany Mitchell in BBC's EastEnders. McCutcheon released her autobiography, Who Does She Think She Is? in 2000.

Source: UTV, Sept 22, 2013

"In a candid interview with The Sun newspaper, the star admitted she struggled with fainting fits and was confined to a wheelchair after one particularly frightening episode, while she also piled on weight and felt too unwell to work.

She stayed at home and went weeks without leaving the house, and at her lowest point, she confessed she felt suicidal, telling the newspaper: "I would pray to God I wouldn't wake up. I would just say, 'Please, whatever this is, it is making me feel so bad, just let it kill me'... I don't know if the ME or the depression came first, all I knew was life felt like hell every day...

"The longest I went without leaving the house was a month. I didn't want to see or speak to anyone. I couldn't cope with everyday things, even feeding my dog. The low point was when I was lying on the sofa and could not move. I felt suicidal... I did think it would be better if I just didn't wake up."

Read the rest of this article HERE.