Summary of HHS IOM contract situation: hiding an epidemic illness that is robbing millions of people of their life

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Summary of HHS IOM contract situation
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/

 andhttp://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 ( 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/) but so far Ms.

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!

If you would like more information, I would be happy to help. You can also see more detailed information here:

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

Veterans with Gulf War Illness show brain changes linked to memory deficits

sciencedaily.com:

Oct. 15, 2013 — New research illuminates definitive brain alterations in troops with Gulf War Illness (GWI) thought to result from the exposure to neurotoxic chemicals, including sarin gas, during the first Persian Gulf War.

"More than 250,000 troops, or approximately 25% of those deployed during the first Persian Gulf War, have been diagnosed with Gulf War Illness (GWI). Although medical professionals have recognized the chronic and often disabling illness for almost two decades, brain changes that uniquely identify GWI have been elusive until now," explained researcher Bart Rypma, principal investigator at the Center for BrainHealth at The University of Texas at Dallas.

This study, published in Clinical Psychological Science, a journal of the Association for Psychological Science, is novel in that it confirms GWI deficits in working memory, a critical cognitive function that enables short-term retention of information for higher-level thinking ability. In addition, brain alterations revealed in the study show a consistent pattern representing a neurobiological marker that could potentially be used to positively identify GWI. The research team assessed three aspects of working memory: accuracy, speed, and efficiency. Results showed that participants with GWI performed significantly slower and less accurately than matched healthy veterans, and their efficiency decreased with increasing task difficulty.

During these difficult conditions, the participants showed relatively lower levels of activity in prefrontal brain regions which may compromise their ability to implement effective, higher-level thinking strategies in cognitively demanding situations. "Our results revealed that at the root of cognitive issues in GWI patients are profound working memory deficits that correlate with a unique brain change visible in the fMRI scanner. These results support an empirical link between exposure to neurotoxic chemicals, specifically sarin nerve gas, and cognitive deficits and neurobiological changes in the brain," said Rypma. "Implementing interventions that improve working memory could have positive effects on many aspects of daily life from the ability to complete a shopping list, match names with faces, all the way to elevating mood."

"Difficulty remembering has been the most common, unexplained impairment resulting from service in the 1991 Persian Gulf War," said Robert Haley, co-investigator and Chief of Epidemiology at UT Southwestern Medical Center in Dallas. "This functional MRI study provides the first objective evidence showing the exact malfunctions in the brain's memory circuits that underlie these chemically induced memory problems."

The new findings may also have implications for the treatment of several disorders involving similar neural systems, including one Alzheimer's disease. "Both GWI and Alzheimer's disease result in profound cognitive impairment and share similar neurochemical underpinnings," explained the study's lead author Nicholas Hubbard. "The distinct neural markers associated with cognitive performance and GWI revealed in our study can be useful for future research to objectively measure the efficacy of treatments for GWI as well as other brain disorders related to the same neurotransmitter system, like Alzheimer's disease."

Story Source:

The above story is based on materials provided byAssociation for Psychological Science.

Note: Materials may be edited for content and length. For further information, please contact the source cited above.

---

Journal Reference:

1. N. A. Hubbard, J. L. Hutchison, M. A. Motes, E. Shokri-Kojori, I. J. Bennett, R. M. Brigante, R. W. Haley, B. Rypma.Central Executive Dysfunction and Deferred Prefrontal Processing in Veterans With Gulf War Illness. Clinical Psychological Science, 2013; DOI:10.1177/2167702613506580

Need to cite this story in your essay, paper, or report? Use one of the following formats:

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Association for Psychological Science (2013, October 15). Veterans with Gulf War Illness show brain changes linked to memory deficits.ScienceDaily. Retrieved October 18, 2013, from http://www.sciencedaily.com­/releases/2013/10/131015191409.htm

Note: If no author is given, the source is cited instead.

Dr. Mikovits' response to the CAA: the CAA has never served in the best interests of the patients

October 05, 2013, 11:17:28 PM by Wildaisy:

Wildaisy

• Administrator
• Hero Member
• 
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• Posts: 12669

Re: CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

« Reply #43 on: October 05, 2013, 10:51:38 PM »

The CFIDS ASSociation did contact Dr. Mikovits.  Here is what she said when I asked her if the CAA had contacted her and asked her to withdraw her support from the Open Letter to Secretary Sebelius:

Quote

Yes they did and below is the response I sent:

To whom it may concern:

I absolutely stand by my work of the last 7 years  including my signature on the letter to secretary Sebelius of 9/23 regarding the case definition of ME/CFS.I know that the CAA  is not and has never in my experience responded to concerns expressed by the patients nor do they now or have they ever served in the best interests of the patients as is the only duty of an advocacy organization. This IOM contract is simply a waste of precious resources.I stand by my signature on the  letter and my work which is now always has been and will always be in the best interests of the patients.

Sincerely,

Judy A Mikovits, PhD

« Last Edit: October 05, 2013, 11:17:28 PM by Wildaisy »

 Logged

nhsManagers editorial: ME/CFS, an illness that is defined by the fact that exercise makes it worse

Nancy Blake, 3 October 2013, @ nhsmanagers.net:

Guest Editorial > A Radical Care Pathway for ME/CFS

03

Oct

A Radical Care Pathway for ME/CFS | Nancy Blake

Much maligned and misunderstood, ME gets a radical makeover in this exclusive editorial for nhsManagers.network. But is this pathway really so radical? Perhaps only if you are a healthcare professional!

Analysis

Based on the premise that if an illness is defined by the fact that exercise makes it worse, maybe that should be a starting point for dealing with it!

Immediate diagnosis by careful initial interview:  If patient reports an extraordinary level of debility following a viral illness, which has persisted – has other symptoms which seem random and variable but can be understood as problems of muscle metabolism, cognitive function (short-term memory problems, difficulty in following lines of reasoning), endocrine function (disturbances of appetite, sleep rhythms, temperature regulation) and immune system activity (sore lymph glands, persistent low fever, sore throats),  this whole constellation points to ME/CFS.

This should be regarded as a medical emergency, because the patient’s behaviour in the early stages determines either a path towards recovery or a path towards extreme and long lasting states of incapacity. (1)
The basic prescription should be to go home and go to bed; just doing the minimum exercise necessary to prevent DVT (getting up to go to the loo might be enough!).  Families need an explanation that for the patient, minimising muscular exertion is essential.  A home visit from a Physiotherapy/OT team can provide advice about how to do everyday tasks using a minimum of muscular exertion, like the advice given to MS sufferers for the management of their exhaustion.  The OT should assess the home and recommend/ provide aids as appropriate for any physical illness which causes extreme weakness. The patient will need psychological support to accept that the (unwelcome!) adoption of a ‘disabled’ lifestyle is the way to ‘fight’ this illness and facilitate a gradual return to as normal a life as possible.   After that, a regular visit from a key worker backed up by online support may be all the patient needs while he is conserving energy towards getting better.

What should absolutely not happen is a referral to hospital, unless to provide a period of complete bed rest.  Tests to eliminate other potential diagnoses should be done at home as far as possible.  The expensive centres which have been set up, requiring patients to attend in order to engage in extra exertion (just getting to a hospital appointment is enough to wipe out an ME/CFS patient for days) should be replaced by these less expensive domiciliary services.   Apart from encouragement to keep on resting, and encouragement to family members to appreciate that this is needed, the patient should be left alone, allowed plenty of time to get better.  Under this regime, gradual improvement is to be expected  (school-age children should be provided with home education until a gradual return to school becomes a possibility).

When the patient is ready, there should be interventions at the patient’s educational institution/place of work aimed at eliminating all avoidable exertion. Along with facilities for rest breaks and perhaps being able to do some work from home, this gives the patient the best chance of returning to their education, job, or professional activities.  Which, contrary to the ‘false illness beliefs’ of some psychiatrists, is what patients are desperate to do.  It needs to be respected that this illness is not one of motivation: ‘I can’t’ does not mean ‘I don’t want to’, it means that there is a physical limit to what the patient can do without serious subsequent repercussions.
Doctors brave enough to use this ‘light touch’ approach would be rewarded by positive relations with their patients, and the prospect of seeing them getting better instead of getting worse.  But it would take real courage to challenge the cultural myths that ‘fighting’ illness is the only way to go, that exercise is good for absolutely everything, and that people who have ME/CFS don’t want to get better, and must be persuaded or coerced into activity.  Counter-intuitively, treating ME/CFS patients like invalids initially is the process most likely to maximise ‘return to function’.

The current psychiatric model has no way of acknowledging treatment failure – failure can always be blamed on the patient.  No wonder there is so much hostility.  It is time to step across the divide, accept that patients are telling the truth, and start giving them a chance to get better.

Nancy Blake is author of ‘A Beginner’s Guide to CFS/ME’, and co-author, with Les Simpson, Ph.D. of ‘Ramsay’s Disease – ME’.  She is currently undertaking a Ph.D. project at Lancaster University on the conflicting paradigms of ME/CFS

Email: alternatives@alternatives.karoo.co.uk>

1. www.name-us. Melvin Ramsay. name-us.org. [Online] [Cited: 3 October 2013.] “The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.”

“…in those patients whose dynamic or conscientious temperament urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘ take plenty of exercise’ the condition finally results in a state of constant exhaustion.”

exclusive editorial for nhsManagers.network: A Radical Care Pathway for ME/CFS

Nancy Blake, 3 October 2013, @ nhsmanagers.net:

Guest Editorial > A Radical Care Pathway for ME/CFS

03

Oct

A Radical Care Pathway for ME/CFS | Nancy Blake

Much maligned and misunderstood, ME gets a radical makeover in this exclusive editorial for nhsManagers.network. But is this pathway really so radical? Perhaps only if you are a healthcare professional!

Analysis

Based on the premise that if an illness is defined by the fact that exercise makes it worse, maybe that should be a starting point for dealing with it!

Immediate diagnosis by careful initial interview:  If patient reports an extraordinary level of debility following a viral illness, which has persisted – has other symptoms which seem random and variable but can be understood as problems of muscle metabolism, cognitive function (short-term memory problems, difficulty in following lines of reasoning), endocrine function (disturbances of appetite, sleep rhythms, temperature regulation) and immune system activity (sore lymph glands, persistent low fever, sore throats),  this whole constellation points to ME/CFS.

This should be regarded as a medical emergency, because the patient’s behaviour in the early stages determines either a path towards recovery or a path towards extreme and long lasting states of incapacity. (1)
The basic prescription should be to go home and go to bed; just doing the minimum exercise necessary to prevent DVT (getting up to go to the loo might be enough!).  Families need an explanation that for the patient, minimising muscular exertion is essential.  A home visit from a Physiotherapy/OT team can provide advice about how to do everyday tasks using a minimum of muscular exertion, like the advice given to MS sufferers for the management of their exhaustion.  The OT should assess the home and recommend/ provide aids as appropriate for any physical illness which causes extreme weakness. The patient will need psychological support to accept that the (unwelcome!) adoption of a ‘disabled’ lifestyle is the way to ‘fight’ this illness and facilitate a gradual return to as normal a life as possible.   After that, a regular visit from a key worker backed up by online support may be all the patient needs while he is conserving energy towards getting better.

What should absolutely not happen is a referral to hospital, unless to provide a period of complete bed rest.  Tests to eliminate other potential diagnoses should be done at home as far as possible.  The expensive centres which have been set up, requiring patients to attend in order to engage in extra exertion (just getting to a hospital appointment is enough to wipe out an ME/CFS patient for days) should be replaced by these less expensive domiciliary services.   Apart from encouragement to keep on resting, and encouragement to family members to appreciate that this is needed, the patient should be left alone, allowed plenty of time to get better.  Under this regime, gradual improvement is to be expected  (school-age children should be provided with home education until a gradual return to school becomes a possibility).

When the patient is ready, there should be interventions at the patient’s educational institution/place of work aimed at eliminating all avoidable exertion. Along with facilities for rest breaks and perhaps being able to do some work from home, this gives the patient the best chance of returning to their education, job, or professional activities.  Which, contrary to the ‘false illness beliefs’ of some psychiatrists, is what patients are desperate to do.  It needs to be respected that this illness is not one of motivation: ‘I can’t’ does not mean ‘I don’t want to’, it means that there is a physical limit to what the patient can do without serious subsequent repercussions.
Doctors brave enough to use this ‘light touch’ approach would be rewarded by positive relations with their patients, and the prospect of seeing them getting better instead of getting worse.  But it would take real courage to challenge the cultural myths that ‘fighting’ illness is the only way to go, that exercise is good for absolutely everything, and that people who have ME/CFS don’t want to get better, and must be persuaded or coerced into activity.  Counter-intuitively, treating ME/CFS patients like invalids initially is the process most likely to maximise ‘return to function’.

The current psychiatric model has no way of acknowledging treatment failure – failure can always be blamed on the patient.  No wonder there is so much hostility.  It is time to step across the divide, accept that patients are telling the truth, and start giving them a chance to get better.

Nancy Blake is author of ‘A Beginner’s Guide to CFS/ME’, and co-author, with Les Simpson, Ph.D. of ‘Ramsay’s Disease – ME’.  She is currently undertaking a Ph.D. project at Lancaster University on the conflicting paradigms of ME/CFS

Email: alternatives@alternatives.karoo.co.uk>

1. www.name-us. Melvin Ramsay. name-us.org. [Online] [Cited: 3 October 2013.] “The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.”

“…in those patients whose dynamic or conscientious temperament urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘ take plenty of exercise’ the condition finally results in a state of constant exhaustion.”

@ pubmed

Mol Neurobiol. 2013 Sep 26. [Epub ahead of print]

The Emerging Role of Autoimmunity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/cfs).

Morris G, Berk M, Galecki P, Maes M.

Source

Mumbles Head, Pembrey, Llanelli, UK.

Abstract

The World Health Organization classifies myalgic encephalomyelitis/chronic fatigue syndrome (ME/cfs) as a nervous system disease. Together with other diseases under the G93 heading, ME/cfs shares a triad of abnormalities involving elevated oxidative and nitrosative stress (O&NS), activation of immuno-inflammatory pathways, and mitochondrial dysfunctions with depleted levels of adenosine triphosphate (ATP) synthesis. There is also abundant evidence that many patients with ME/cfs (up to around 60 %) may suffer from autoimmune responses. A wide range of reported abnormalities in ME/cfs are highly pertinent to the generation of autoimmunity. Here we review the potential sources of autoimmunity which are observed in people with ME/cfs. The increased levels of pro-inflammatory cytokines, e.g., interleukin-1 and tumor necrosis factor-α, and increased levels of nuclear factor-κB predispose to an autoimmune environment. Many cytokine abnormalities conspire to produce a predominance of effector B cells and autoreactive T cells. The common observation of reduced natural killer cell function in ME/cfs is a source of disrupted homeostasis and prolonged effector T cell survival. B cells may be pathogenic by playing a role in autoimmunity independent of their ability to produce antibodies. The chronic or recurrent viral infections seen in many patients with ME/cfs can induce autoimmunity by mechanisms involving molecular mimicry and bystander activation. Increased bacterial translocation, as observed in ME/cfs, is known to induce chronic inflammation and autoimmunity. Low ATP production and mitochondrial dysfunction is a source of autoimmunity by inhibiting apoptosis and stimulating necrotic cell death. Self-epitopes may be damaged by exposure to prolonged O&NS, altering their immunogenic profile and become a target for the host's immune system. Nitric oxide may induce many faces of autoimmunity stemming from elevated mitochondrial membrane hyperpolarization and blockade of the methionine cycle with subsequent hypomethylation of DNA. Here we also outline options for treatment involving rituximab and endotherapia.

PMID:

 

24068616

 

[PubMed - as supplied by publisher]