Home - What is M.E.?

1 million Americans and 17 million worldwide affected by one of the most disabling diseases ever...

 

Myalgic encephalomyelitis (ME), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport as well as cardiovascular abnormalities. The disease affects people of all ages, genders, races and economic levels.

Stories

Tom C. Tom-C-for-Home-Page_4d.jpg

Tom developed severe ME following a viral illness in January of 2014. A sophomore at Stanford, Tom was a 4.0 computer science student with a dream research elective and summer job offers at Facebook and Dropbox.

Due to his severe illness, he has been unable to work a job or complete his education. He has been bedridden 23-24 hours a day, not able to read other than a brief occasional message, and conversations are limited.

He is likely to be permanently disabled unless research finds a cure.

 

Tracey S.

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Tracey suddenly became sick in 1989 at age 15 with a triple hit of a stomach virus, pneumonia and mononucleosis. Though the infections cleared, she remained severely ill and housebound. She gradually improved over 5 years - while not completely healthy, she became functional enough to complete a college degree, work full time and get married.

Then, viral infections and an adverse vaccine reaction set off a series of relapses over the next several years. She made drastic lifestyle changes to allow time to rest, and this was helpful to achieve remissions.

However, 10 years ago a progressive decline began, and she became completely disabled and no longer able to work. Her parents moved nearby so her mother (now semi-retired) could take care of Tracey and her children. At age 37 Tracey was diagnosed and treated for Non-Hodgkins Lymphoma (ME patients have an increased risk of cancer).

In all, Tracey has been sick with ME for 26 years. She is homebound and 80-90% bedridden, and has difficulty with self care.

Common misconceptions of the disease

It Is Not Typical Fatigue

The main misconception is that it is similar to the kind of fatigue that normal people feel and that getting proper sleep, eating right, and exercise will cure it.

It Is Not Laziness

Another misconception is that if people don't get well, it's their own fault for being lazy and not trying hard enough. Or that at one point people were sick with some virus, but now they're well - they're just afraid to exercise - so antidepressants and talk therapy will cure them.

ME Is A Serious Neuroimmune Disease

The truth is these people have a very serious neurological disease which impacts the body’s energy production system at the cellular level via dysregulation of the immune and nervous systems --- they need to pace themselves and rest or they will get worse (possibly much worse). You can’t exercise your way out of this disease. It is not uncommon to hear of people who went from being able to work to being permanently bedridden because they tried to push through their symptoms.

Frequently Asked Questions

What is chronic fatigue syndrome (CFS)?

Although ME is recognized as a neuroimmune disease around the world, in the US, governmental health agencies redefined ME as “chronic fatigue syndrome” (CFS). CFS is a political and social construct consisting of a fatiguing psychological illness which purportedly can be resolved with cognitive behavioral therapy (CBT) and graded exercise therapy (GET). This was done to satisfy various lobbies such as psychiatrists and insurance companies. In other words, it’s not based in science.

Since ME has currently not been officially recognized or widely known in the US, it is very hard to get an ME diagnosis. The best medical diagnosis that a patient can expect will likely be CFS or fibromyalgia, while in reality, approximately 50% of these patients actually have ME. Treatments recommended for CFS or fibromyalgia, such as graded exercise, are not beneficial or advised for ME patients. This problem has been the cause of much suffering for ME patients.

Is ME same as CFS?

No - patients who fit the criteria for ME also fit the criteria for CFS. But patients who fit the overly broad criteria for CFS may not fit the criteria for ME.

Why is ME not getting attention?

Neglect

Again this is complicated, but due to the government's institutional bias against the disease, ME has been mishandled and not taken seriously. They renamed the disease a very trivializing name "chronic fatigue syndrome", and have created a series of very loose definitions, misdiagnosing people who actually have depression, multiple sclerosis or other diseases with overlapping symptoms. This makes progress with research difficult because they are studying several diseases, not "the" disease.

Rebranding

The recently proposed new name and definition, “systemic exertion intolerance disease”, is basically deja vu all over again. A recent study by Leonard Jason has shown that the proposed name and definition is almost 3 times looser than the existing 1994 CFS definition, and not nearly as good as already existing definitions created by ME disease experts. The government refuses to adopt these other definitions (for example, the Canadian Consensus Criteria, already in use in Canada).

Lack of Funding

In addition, the federal research budget has been a paltry $5 million per year for the last 25 years, which is at the bottom of the list of diseases. The disease needs to be funded at $250 million annually to get on par with similar diseases.

Why is it so important that ME gets attention?

Extremely Poor Quality of Life

A recent study by Michael Falk Hvidberg has shown that someone with ME has the worst quality of life out of 20 major diseases - even worse than multiple sclerosis and stroke.

The disease affects about 1 million Americans and 17 million worldwide - two to three times the rate of multiple sclerosis. There are no FDA approved treatments, no cause and no cure. It's very hard to get diagnosed - it's typical to have to go to many doctors before you can get a diagnosis. Most patients (85%) remain undiagnosed. About the best that can be done is to rest aggressively and try to relieve the symptoms. 25% of patients are extremely disabled - homebound or bedridden.

It's very rare for anyone to have a full recovery. For some, "partial remission" occurs, but relapses frequently undo any improvement. This disease is basically a life sentence - people get sick young - as young as teenagers, and stay that way for the rest of their lives.

Hope

It doesn't have to be this way - for example, there are small trials of existing FDA approved drugs such as antivirals and immune modulators which are very helpful for some people. More research needs to be done as to which subsets can be helped by these drugs, and then get the drugs approved for use in this disease.

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  • Featured post

    CDC, You Need a Bigger Ear Horn

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    By Frederick Dekkers (mechanical reproduction of 2D image) [Public domain], via Wikimedia Commons

    Letter Confronting CDC's Continued Deaf Ear to the ME Community

    Since the inception of MEadvocacy.org, we have fought against the systemic bias of demeaning patients and fraudulently misrepresenting myalgic encephalomyelitis (ME) at Health and Human Services (HHS), National Institute of Health (NIH) and Center for Disease Control (CDC).  

    The day before Thanksgiving, we were approached by an individual advocate, asking us to sign onto a completed letter which other advocacy organizations and advocates had already signed. The letter was in condemnation of CDC’s continued use of scientifically indefensible recommendations for cognitive behavioral therapy (CBT) and graded exercise therapy (GET) on their website and educational materials.  Additionally, the letter addressed the website containing unfounded statements about the nature of CFS being psychogenic as well as requesting removal of these references from the website.

    Although, we had some reservations about sections of the letter such as the mention of the NAM (previously known as the IOM) report “Beyond ME/CFS: Redefining an Illness”, we have chosen to sign onto this letter because we agree with its core message of holding CDC accountable for the accuracy of all the information that appears on their website and on all their educational materials. We do not support using NAM definition in place of the experts ICC primer.

    We are confident that the removal of the offending materials on the CDC website concerning CBT and GET treatments and psychogenic etiology, will have an immediate positive impact on the lives of all ME patients - from mild to severe , since it will aid in relieving  suffering, improving conditions for patients, and reversing the continued disbelief in the medical community of the biomedical nature of this disease. These achievements fit into MEadvocacy’s mission.

    Important Notes

    Not All Criteria are the Same

    Sometimes ME, as described by the ICC or Ramsay definitions, is inaccurately referenced as an alternate name to CFS (Fukuda criteria) and is found on the CDC website under CFS. The disease, myalgic encephalomyelitis, is not included on CDC’s list of diseases and using that term in the search engine box at the CDC website reroutes to CFS materials.

    Using the ICC Primer

    We would like to highlight that the letter asks that the ICC primer is also included in the educational materials/website.  If you aren’t familiar with the International Consensus Criteria (ICC) please see our blog:  THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria?

    Past Requests to Address CBT and GET

    CDC Ignores CFSAC

    Since 2012, the Chronic Fatigue Syndrome Advisory Committee (CFSAC), through the efforts of their CDC working group, has recommended many specific changes to the CDC website and their educational materials including the removal of psychogenic references, CBT, and GET. The CDC has ignored the very committee that Dr. Unger herself is a member of.

    CDC Ignores Advocates

    A year ago, November 19, 2015, MEadvocacy published the blog Tell HHS to Remove Flawed PACE Recommendations from Clinical Guidelines about our signing a letter along with other advocacy organizations calling for investigation into the flawed PACE trial and asked that the CDC remove all recommendations and risk and prognosis statements based on PACE and other Oxford studies from its current and planned medical education material.  The reaction from the CDC was to ignore the request and continue with more of the same neglect of the ME patient population. The Agency for Healthcare Research and Quality (AHRQ) just downgraded recommendations for CBT and GET in the AHRQ Addendum once Oxford studies were excluded.

    More History with CDC

    In January 2016, the CDC approached MEadvocacy to join a working group to provide stakeholder input on CDC’s educational and informational materials which includes the CDC website.  After receiving confirmation from Dr. Unger that the CDC work group’s scope was to advise on incorporating only NAM diagnostic criteria and that the CDC would not revise treatments, MEadvocacy opted out of the working group because we do not condone the use of overly broad criteria from the NAM report.

     

    Any bets on if CDC removes CBT and GET in their next website update expected sometime in 2017?

    https://upload.wikimedia.org/wikipedia/commons/2/21/IsthmusCityChips.jpg

     By Podknox, User:AlanM1 (Cropped from [1]) [CC BY 2.0

    (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons


    How you can help counter the spread of the unscientific psychogenic illness model of ME:


    Join MEadvocacy in supporting the UK ME community’s project Opposing MEGA (OMEGA) to counter efforts of researchers that promote the psychogenic bio-psycho-social model of ME.:

    “A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.  

    The BPS illness model of ME/CFS assumes that biological abnormalities and physical symptoms are caused or maintained by psychological or social problems and may be treated by changing the patient's thoughts and behaviours.” -- excerpt from petition

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  • Featured post

    Knocking Down NIH Bias

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    MEadvocacy.org has published two blogs regarding NIH’s invitation to Edward Shorter to speak at their NIH Clinical Center on November 9, 2016. Researchers, advocates and patients were opposed and fought this presentation because it would be used as propaganda to validate the unscientific psychosomatic view of myalgic encephalomyelitis (ME). See our blogs for more information: Systemic Bias Continues at NIH and Our Response to Dr. Koroshetz' Refusal to Cancel Lecture by ME Disease Denier.

    Here is what Dr. Janet Dafoe, a clinical psychologist, shared on her FB post about her spouse Dr. Ron Davis, a world-renowned geneticist and ME/CFS researcher:

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    Despite the many letters to NINDS Director Walter Koroshetz demanding the cancellation of this presentation, it took place as scheduled with an audience that included personnel heavily involved in the ME clinical study. Shorter was actually introduced by the lead investigator of the clinical study, Dr. Brian Walitt.

    Dr. Dafoe also shared on Twitter that Dr. Davis was advocating for a congressional investigation if Shorter’s lecture was not canceled.

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    It is a weak advocacy method to keep insisting on a “seat at the table” with the government when this “coveted seat” only serves to advance the government’s agenda.  At times like this, when our demands are met by a brick wall, our advocacy methods need to take a new and different course.

    We can then use our efforts to fight from the “outside” and seek collaborations with outside forces such as our congressional representatives.  Falling for a false sense of inclusion is a dangerous course to take and will retain the status quo of NIH bias.

    When the US government puts up another brick wall, we need to get out our wrecking ball and pickaxes and tear it down.


    For deeper insight into the NIH bias, please read Gabby Klein’s blog at Relating to ME:  Promises, Promises: Thirty Years of NIH Broken Promises

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  • Featured post

    Systemic Bias Continues at NIH

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    See bottom of blog for updates.

     

    The myalgic encephalomyelitis (ME) community became aware November 3, 2016 that the U.S. National Institute of Health’s (NIH) ME/CFS Interest Group had scheduled a lecture, “Chronic Fatigue Syndrome in Historical Perspective,” by Edward Shorter, Ph.D. to take place on November 9, 2016 (see here for original event).   This was discovered through Dr. Maureen Hanson’s tweet about the lecture to the community. Dr. Shorter is a professor of history and psychiatry who has been an open proponent of the misguided belief that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a somatoform condition.

    Shorter has written a book about psychosomatic disorders, From Paralysis to Fatigue -”a fascinating history of psychosomatic disorders shows how patients throughout the centuries have produced symptoms in tandem with the cultural shifts of the larger society. Newly popularized diseases such as "chronic fatigue syndrome" and "total allergy syndrome" are only the most recent examples of patients complaining of ailments that express the truths about the culture in which they live.”  In addition, he has written various articles and comments on articles which spew the same lies about the organic neuroimmune disease, ME.

    It is not surprising then, that ME patients and advocates became outraged at the fact that the NIH would choose a proponent of the psychosomatic view of the disease to lecture  NIH researchers at the NIH Clinical Center about the history of the neuro immune disease ME.  Patients and advocates immediately sent letters to the NIH ME/CFS representatives, expressing their shock and asking the NIH to cancel Shorter’s speaking engagement.

    The following is the reply from Dr. Koroshetz to those who wrote in to complain:

    Dear members of the ME/CFS community,

    I appreciate the concern of many in the ME/CFS community as expressed in Ms. Spotila’s blog post concerning the visit and lecture by a Professor of the History of Medicine at the NIH intramural research program. It is important to understand the NIH’s commitment to reduce the burden of illness for people suffering with any illness regardless of its cause or its manifestations. In fact the study of one condition not infrequently leads to clues to the treatment of another in totally unpredicted ways. The exchange of information and widely divergent scientific opinions followed by critical analysis is essential to moving any field forward. Investigators at NIH regularly invite individuals to conversations about their areas of interest. This inclusion in scientific conversation is not an endorsement. Rigorously collected data that enables causal inference is the foundation of science. This remains the foundation of the NIH, and as stated from the start the NIH intramural investigators will focus on post-infectious ME/CFS in order to closely examine the clinical and biological characteristics of the disorder and improve our understanding of its cause and progression.

    I hope that the ME/CFS community can endorse this scientific enterprise as we at NIH try to direct it to the problems faced by those who suffer with ME/CFS, both here at intramural research program and at universities and medical centers across the country. We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success. At this point sadly we don’t know where the scientific enterprise will lead us, how long it will take, or from what area of research effective treatments will come.

    The Professor mentioned in your letter was initially incorrectly listed as part of the ME/CFS Special Interest Group, which was corrected. The speakers that have come to the ME/CFS investigators are listed on the website at (http://mecfs.ctss.nih.gov/sig.html) and include:

    June 15th, 2016: Anthony Komaroff, M.D.: An Overview of Chronic Fatigue Syndrome (ME/CFS)

    July 18th, 2016: Leonard Jason, Ph.D.: Diagnostic Challenges and Case Definitions for CFS and ME

    August 24th, 2016: Daniel Peterson, M.D.: CFS/ME: Perspectives from a Local Epidemic 1984-2016

    September 21st, 2016: Staci Stevens, M.A. and Mark Van Ness, Ph.D.: Cardiopulmonary Exercise Testing in ME/CFS

    Sincerely yours,

    Walter J. Koroshetz, M.D.

    Director, National Institute of Neurological Disorders and Stroke

    On behalf of the Trans-NIH ME/CFS Working Group

     

    So, basically, what we hear Dr. Koroshetz is saying:

    • I hear your concern

    • Your thoughts are not important enough to change my mind

    • I think the belief that ME/CFS is somatoform constitutes a scientific enterprise

    • We don't have evidence that ME/CFS is biological

    • Science might lead us to the conclusion that it is just psychosomatic

    • I hope you'll endorse my view

    NIH, subsequently removed the event announcement of Dr. Shorter’s lecture sometime during the night of Nov. 3, 2016 or morning of Nov. 4th CST. Here is link to the NIH event page as it appeared on November 4, 2016 8:02:52 PM UTC.

    To clarify, Koroshetz’ carefully worded his response attempted to side-step the complaint. He stated that Shorter was not part of the ME/CFS Special Interest Group and this would be corrected. The event announcement actually said that the ME/CFS Interest Group invited Shorter. It never said that he was part of the group. The event was announcing that Shorter's lecture was for NIH researchers, not that it was a meeting of Shorter and the group.

    Dr. Koroshetz’ reply is not surprising.  It is just more of the same dismissing the voice of the patient community and repudiation of the biological nature of the disease.  After all, this is the same NIH that hires and continues to employ investigators like Drs. Brian Walitt, Fred Gill, and Leorey Saligan.  

    These NIH investigators all spew the same unscientific theory about ME patients - portraying that it is just the patients’ thoughts that make them think they are sick, that they are catastrophizing and attention seekers. These investigators’ hypothesis that psychosomatic diseases have an altering effect on biological processes is suspiciously similar to Shorter’s university bio webpage quote, “Melancholia as a distinctive illness in its own right, with characteristic biological markers.”

    This is the same NIH that worked with the CDC to re-write the origin of the disease.

    Step 1) Take a name (ME) and twist it (CFS) to imply it is not a disease but a symptom of fatigue rather than an acquired disease with immune abnormalities as seen in the Lake Tahoe outbreak.  (See Osler’s Web by Hillary Johnson, and our ME science resource page).

    Step 2) Define the disease with overly broad and faulty criteria so the psychologists/psychiatrists can now diagnose those with depression and somatoform disorders as CFS. NIH’s Dr. Straus and CDC’s Dr. Fukuda purposefully created the currently used Fukuda criteria so that those with somatoform disorders would fit under the CFS Fukuda criteria and be diagnosed as CFS. Thus muddying the cohort even further and resulting in confusing and unreliable research under the name CFS.

    More alarmingly, these investigators were selected by NIH to work on the NIH ME/CFS Clinical Study.  Dr. Walitt has been given the distinguished position of lead investigator! (see MEadvocacy.org's blog -NIH Sidesteps Critical Problems with the ME/CFS Study for details).  

    NIH director, Dr. Francis Collins, and Dr. Walter Koroshetz  disregarded the protest by the ME patient and advocate community via petitions and letters demanding that these problematic investigators be removed from the NIH ME/CFS Clinical Study.

    Additionally, the demand by ME patients and advocates to have input into the NIH study from the planning stage throughout all the steps of study have fallen on deaf ears as well. (The creation of small patient focus groups on specific subjects does not qualify for ongoing patient input from start to finish.)

    The time has come for the ME community to face the facts of the dangers of the current NIH's leadership understanding and beliefs about ME.  This is also why as outlined in MEadvocacy's blog, it is crucial to use the international experts' criteria [ICC]* to distinguish the neuro-immune disease ME, as opposed to the "fatiguing condition" as described by the other criteria.

    Whereas, we do agree that NIH's invitation to Dr. Shorter to present a lecture at the NIH is inappropriate, damaging and should be canceled, it pales against the harm to ME patients from the ongoing employment of problematic investigators at the NIH and their assignment to the NIH ME/CFS Clinical Study.

    It is clear that without congressional intervention this malfeasance will continue unhindered. The ME community needs to testify to congress about this ongoing malfeasance and medical harm to their constituents.  A congressional hearing may be the only way our voices will get heard.

    WHAT YOU CAN DO:

    Contact your members of congress and tell them:

    • NIH continues to ignore ME patients’ pleas for biomedical research into disease

    • We need funding of at least $250 million per year for research into ME

    • Consider a congressional hearing to find out why ME and other similar patient communities like Fibromyalgia, Gulf War Illness, and Chronic Lyme patients are being mistreated

    • Sign petition at Change.org:Calling for a Congressional investigation of the CDC, IDSA and ALDF”

    Volunteer for MEadvocacy by contacting us at MEadvocacyorg@gmail.com


     

    Special thanks to independent advocate and MEadvocacy volunteer, Gabby Klein, for co-writing this blog with the advisory committee.

    Blog mentioned in Dr. Koroshetz's response: An Open Letter to Dr. Koroshetz by Jennie Spotila

     

     

    Blog Post-Publication Additions:

    * In addition to the ICC criteria, expert advocates also support use of Ramsay’s ME definition due to its development based on patients in epidemic cohorts. (Added as if as of Nov. 8, 2016)

    Here are additional patient/advocate letters in regards to protesting Dr. Shorter’s lecture at the NIH Clinical Center:

    MEadvocacy.org
    Advisory Committee & patient advocate Gabby Klein Letter to Koroshetz:

    http://www.meadvocacy.org/our_response_to_dr_koroshetz_refusal_to_cancel_lecture_by_me_disease_denier  (Added as if as of Nov. 8, 2016)

    Deborah Waroff’s Letters:

    Deborah Waroff’s Letter to Koroshetz

    https://www.facebook.com/deborah.waroff/posts/10154421575728941

    Deborah Waroff’s Letter to Nath

    https://www.facebook.com/groups/1471389426411574/1791756414374872/?notif_t=group_activity&notif_id=1478544573418660 (Added as if as of Nov. 8, 2016)

    Nancy Blake’s Letter to Koroshetz:

    Nancy Blake’s Letter to Koroshetz

    https://www.facebook.com/nancy.blake.9803/posts/10209696691087077 (Added as if as of Nov. 8, 2016)

    Tina Tidmore’s Letter to Koroshetz:

    http://mecfsfromme.blogspot.ca/2016/11/its-not-scandal-its-cover-up.html?m=1 (Added as if as of Nov. 8, 2016)

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  • Featured post

    Our Response to Dr. Koroshetz' Refusal to Cancel Lecture by ME Disease Denier

     

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    This letter is in reply to Dr. Koroshetz letter of Nov 4, 2016 to the ME/CFS community refusing to cancel the invitation by NIH of a lecture to NIH investigators titled: “Chronic fatigue Syndrome in Historical Perspective”.

    Dear Dr. Koroshetz,

    Thank you for your time in replying to the ME/CFS community regarding our objection to NIH's invitation to Dr. Edward Shorter to lecture on "a historical perspective on CFS". In your letter, you ask the community to endorse "the scientific enterprise" of Dr. Shorter's viewpoint about ME/CFS (that it is a somatoform condition).  You assert: "We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success."

    Let us explain why not only will the community refuse to endorse Dr. Shorter as an educator about ME/CFS but will object to anyone at NIH who profess the same lies about a disease that has an infectious onset with evidence (over 5,000 published papers) of biological, neurological, muscle, immune, ATP, metabolomic, mitochondrial, gut and autonomic abnormalities.

    The role of any medical doctor is to "first do no harm".  The lazy dogma that ME/CFS is a somatoform condition has harmed millions of patients for the past thirty years. This corruption started following the Lake Tahoe outbreak - when the CDC dismissed biological evidence found there and started a spiral of steps in order to cover-up the real evidence. This whitewashing was accomplished with the machination of a trivial "fatigue" name (chronic fatigue syndrome) and government constructed overly broad and false criteria.

    This burial in the sand of the real facts and evidence of the biological disease myalgic encephalomyelitis still continues today at the CDC and the NIH with the following:  

    • Refusal to adopt and exclusively use the authentic name for the disease - myalgic encephalomyelitis (ME)

    • Rejection of the experts' criteria for the disease (CCC, ICC, Ramsay's) in favor of the government constructed faulty criteria (Oxford, Fukuda, IOM)

    • Disdain toward any recommendation for input in the government process regarding ME/CFS by the patient and advocate community (ignoring CFSAC recommendations; refusing input from start to end in the NIH ME/CFS Clinical Study; preserving faulty information on government websites, educational materials and continuing professional education and many more requests including the current Dr. Shorter issue)

    • Employing NIH investigators with the same false illness beliefs about ME/CFS as Dr. Shorter's (somatoform, catastrophizing) and appointing them to the current NIH ME/CFS Clinical Study while ignoring the outcry from the patient and advocate community (Drs. Walitt,  Gill and Saligan - see blog NIH Sidesteps Critical problems with the ME/CFS Study).

    • Suppressing adequate and equitable NIH funding for the past 30 years resulting in the prolonged suffering and early deaths of millions of ME patients  ($250 million a year is the minimum amount ME/CFS should be getting - equitably, it should be $2 billion a year)

    It is evident that this malfeasance has been and continues to be the pattern with CDC and NIH.  It is obviously a profitable enterprise for NIH to be able to "fit" as many conditions as possible under the so-called “Conversion Disorder” (Functional Neurological Symptom Disorder) and “Somatic Symptom Disorder” (SSD) diagnostic codes. This would absolve NIH from further funding biological studies for these diseases. Your decision that Shorter could add value to NIH's understanding of ME/CFS is not only unscientific and self-serving but, an insult and dangerous to every ME patient.  

    There is historical evidence of many harms to humans performed in the name of "scientific advancement".  On which side will NIH stand when the day of reckoning will come regarding the harm perpetrated by the US government health agencies toward the ME patient community? 

    Sincerely,

     

    MEadvocacy.org Advisory Committee:

    Colleen Steckel, Joni Comstock, and Tracey Smith

    Relatingtome.net - patient advocate and blogger:

    Gabby Klein

     

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  • Featured post

    THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria?

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    Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC.

    MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit the 2011 International Consensus Criteria.

    _____________________________________________________________________

    Do I fit the International Consensus Criteria?

    Questionnaire for patients over age 18

    Disclaimer: This questionnaire does not replace the full International Consensus Criteria (ICC) document or the primer. It is based on the symptoms of the criteria and should not be used as a substitute for medical advice from a licensed medical professional. This document is for informational purposes. Consult a physician experienced in diagnosing ME. It is important to evaluate for other diseases before assigning a diagnosis of ME (ICD code G93.3).

    According to the ICC a six month waiting period is NOT required for diagnosis of ME. Removing the waiting period is very important so ME patients can be advised to get complete rest as soon as possible in order to get the best possibility of improved health.  


    SECTION 1

    Must have Post Exertional Neuroimmune Exhaustion (PENE)


    PENE is physical inability to produce sufficient energy on demand.

    The following are signs you have PENE:

    1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.

    2. Post-exertional symptom exacerbation: such as acute flu-like symptoms, pain and worsening of other symptoms

    3. Post-exertional exhaustion: may occur immediately after activity or be delayed by hours or days

    4. Recovery period is prolonged, usually taking 24 hours or longer.  A relapse can last days, weeks or longer

    5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

    Symptom severity must result in a significant reduction of pre-illness activity level.

    The 2 day Cardio Pulmonary Exercise Test available at Workwell Foundation (California) and Ithaca College (New York) is a 2 day CPET specifically designed to look for inability to repeat physical activity two days in a row.

    If you aren’t sure if you have PENE, watching the following video may help you answer the question.

    Video by Mark VanNess explaining an abnormal physiological response to exertion and the 2 day test:  https://www.youtube.com/watch?v=FXN6f53ba6k&app=desktop

    Do you have PENE:  ___ Yes   ___No

     

    If YES, go to next section.

    If NO, stop quiz. You do not fit criteria.



    SECTION 2

    Check off the ones that apply to you.

    Neurocognitive Impairments

    • ____  Difficulty processing information: slowed thought, impaired concentration such as confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia
    • ____  Short-term memory loss: difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

    Pain

    • ____  Headaches: such as chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches

    • ____  Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non inflammatory in nature and often migrates. In other words have generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain.

    Definitions:

    Hyperalgesia: increased sensitivity to pain

    Myofascial: pertaining to a muscle and its sheath of connective tissue, or fascia

     Sleep Disturbance

    • ____  Disturbed sleep patterns: such as insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, waking much earlier than before illness onset, vivid dreams/nightmares

    • ____  Unrefreshed sleep: awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

     Neurosensory, perceptual and motor disturbances

    • ____  Neurosensory and perception:  inability to focus vision, sensitivity to light, noise, vibration, odor, taste and touch; impaired depth perception

    • ____  Motor:  muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

    Definitions:

    Ataxia:  Inability to coordinate muscle activity

     

    Did you check at least one box in at least three categories in section 2?  __ Yes   __ No

    If YES, go to next section.

    If NO, continue for possible atypical ME criteria.



    SECTION 3

    Check off the areas that apply to you.

    • ____  Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion. Such as sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender

    • ____  Susceptibility to viral infections with prolonged recovery periods

    • ____  Gastro-intestinal tract: such as nausea, abdominal pain, bloating, irritable bowel syndrome

    • ____  Genitourinary: such as urinary urgency or frequency, excessive urination at night

    • ____  Sensitivities to food, medications, odors or chemicals

     

    Did you check at least three boxes in section 3?     ___ Yes  ___ No

     

    If YES, go to next question.

    If NO, continue for possible atypical ME criteria.



    SECTION 4

    Check off the ones that apply to you:

    • ____  Cardiovascular - inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

    • ____  Respiratory - air hunger, laboured breathing, fatigue of chest wall muscles

    • ____  Loss of thermostatic stability - subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities

    • ____  Intolerance of extremes of temperature

     

    Did you check at least one box in section 4?     ___Yes  ___ No

     

    If NO, continue for possible atypical ME criteria.

    If you have answered YES to each section, you fit the

    International Consensus Criteria for Myalgic Encephalomyelitis.


    If you answered no in section 2, 3, or 4 you may have atypical ME.

    Atypical myalgic encephalomyelitis​: meets criteria for PENE (section 1) but has a limit of two less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

    Myalgic encephalomyelitis International Consensus Criteria Authors: B. M. Carruthers, M. I. van de Sande, K. L. De Meirleir, N. G. Klimas, G. Broderick, T. Mitchell, D. Staines, A. C. P. Powles, N. Speight, R. Vallings, L. Bateman, B. Baumgarten-Austrheim, D. S. Bell, N. Carlo-Stella, J. Chia, A. Darragh, D. Jo, D. Lewis, A. R. Light, S. Marshall-Gradisbik, I. Mena, J. A. Mikovits, K. Miwa, M. Murovska, M. L. Pall, S. Stevens

    Note: pediatric symptoms vary - See source at this link for pediatric: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full  

    Link to the International Consensus Primer for Physicians which lists tests and treatment options for those who fit the ICC:  http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf

    ___________________________________________________________________

    PRINTABLE VERSION:


    Here is a link to the Questionnaire if you would prefer to print it out.

    https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636

    WHAT CAN YOU DO?

    LEARN MORE:  

    To better understand the various criteria used for ME. and CFS, please read our blog, Analysis of CFSAC August 2015 Recommendations for the IOM Criteria, from Dec 2015: http://www.meadvocacy.org/analysis_of_cfsac_august_2015_recommendations_for_the_iom_criteria

    EDUCATE OTHERS:

    Help us educate patients so they can become their own advocate by sharing/liking this blog on social media platforms; liking/and or sharing the MEadvocacy facebook page posts; and liking/retweeting MEadvocacy tweets.

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  • Featured post

    Tom Jarrett, ME Patient Advocate, Passes

    tom_jarrett.jpg

     

    It is with very heavy hearts that we report the passing of our friend and fellow ME advocate, Tom Jarrett.

    Tom came to MEadvocacy in the fall of 2014 looking for help with a protest against the Pathways to Prevention Workshop (P2P) at the National Institutes of Health (NIH). Despite being in constant pain and needing to lay in a zero gravity recliner, Tom organized on very short notice an awareness event, traveling 10+ hours to protest at the NIH, with himself, church and family members, including his wife and two young boys, in attendance. It was a very cold winter day. A cameraman from the documentary, “Canary in a Coalmine” stopped by to film.

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  • Featured post

    Gone Fishin'

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    The MEadvocacy Advisory Committee is taking a well deserved break for the summer. See you in the fall.

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  • Featured post

    Diseasemaps.org - Let's Put ME on the Map!

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    As you may know, the general public, medical professionals and politicians are mostly unaware of the prevalence and severity of myalgic encephalomyelitis (ME) in the U.S. and around the world.

    A visual representation can have more impact than words or numbers, or as a wise person once said “A picture is worth a thousand words”.

    A visual map representing the thousands and thousands of ME patients in every nation, state, city and voting district can be used to show how many of a politician’s constituents are affected, and hopefully spur them to action on our behalf. 

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  • Featured post

    MEadvocacy Reaches Members of Congress

     

    2016 June packet.jpg 

    Appropriations Submissions

    Each year the Senate and House appropriations committees take submissions for planning the federal budget and expenditures. This includes funding for federal disease research. This spring, MEadvocacy once again sent in submissions outlining the devastating nature of myalgic encephalomyelitis (ME) and the need for research.  

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  • Featured post

    Circulatory Impairment in Myalgic Encephalomyelitis: A Preliminary Thesis

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    Guest blog by Maryann Spurgin, Ph.D.

    "An idea is always a generalization, and generalization is a property of thinking. 
    To generalize means to think."

    ~ Georg Wilhelm Friedrich Hegel

    “As the biggest library if it is in disorder is not as useful as a small but well-arranged one, so you may accumulate a vast amount of knowledge but it will be of far less value than a much smaller amount if you have not thought it over for yourself.”

    ~Arthur Schopenhauer

    "Out-of-date theories are not in principle unscientific because they have been discarded."

    ~Thomas S. Kuhn, The Structure of Scientific Revolutions

    "We see the world in terms of our theories."

    ~Thomas S. Kuhn

    Note: I wrote this proposal in the late Fall of 2015 and in early 2016 as a work proposal (Circulatory Impairment in Myalgic Encephalomyelitis: A Work Proposal —by Maryann Spurgin, Ph.D. January 16, 2016 

    https://docs.google.com/document/d/1y_SoLHW8NaxBrI8bmBiY-ehBZfd3Ji7yttV50bG5qRY/mobilebasic?pli=1).

    In mid January I began sending it to medical schools, and in late January/early February, I sent an earlier, longer version to some privately funded research teams, including to Ron Davis. Very recently, on May 27, 2016, I sent it to the research team at NIH at the following email addresses:

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