MEadvocacy Advisory-Committee

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  • Apr 30, 2017

May 12, 2017 International Awareness Day- 25th Anniversary!

 

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History of May 12 International Awareness Day

This year marks the 25th anniversary since the late patient and staunch advocate, Thomas (Tom) Hennessy Jr,  designated May 12th as the international awareness day for myalgic encephalomyelitis (ME) and other complex immunological & neurological diseases (CIND) - such as fibromyalgia (FM), Gulf War illness (GWI), multiple chemical sensitivity (MCS), and chronic Lyme disease (CLD).

Tom chose May 12th to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing CIND-like illness and became chronically ill. She spent the last 50 years of her life virtually bedridden, and despite being severely debilitated, started the world’s first school of nursing. 

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The Need to Raise Awareness for Diseases 

Advocates for diseases have the challenge of raising awareness about the plight of their patients in order to educate the public and to raise much-needed funds for research and aid. Advocates for misunderstood and neglected diseases, such as the CIND diseases, have an added urgency to educate because of all the obfuscation and government health agency malfeasance impeding proper diagnoses, treatment, and a possible cure. 

FIBROMYALGIA (FM)

Fibromyalgia is characterized by chronic widespread pain and a heightened pain response to pressure. Due to the pharmaceutical companies’ advertising drugs for fibromyalgia, this illness has gained wide recognition.  Unfortunately, due to lack of proper medical education about these diseases many patients who have ME or Lyme have been misdiagnosed with fibromyalgia leading to inappropriate and harmful treatment recommendations - such as drugs with adverse reactions and exercise which is contraindicated in patients who have ME.  

GULF WAR ILLNESS (GWI)

Symptoms are similar to myalgic encephalomyelitis and chronic Lyme disease, leaving many veterans too ill to work.  GWI patients have too often been ignored by the VA despite evidence of the serious biological nature of this illness.

CHRONIC LYME DISEASE (CLD)

Lyme disease or neuroborreliosis has left millions of people to suffer in isolation with an AIDS-like illness similar to post-sepsis. Victims are frequently misdiagnosed or denied any diagnosis at all.

The only CDC-sanctioned Lyme disease testing is ANTIBODY based. People whose immune systems are destroyed (immunosuppression) don't produce the required antibodies to get a positive test. The “Dearborn” case definition was put in place in 1994, when the now-failed Lyme vaccine, LYMErix was in the trial stage and it became known that the antigen used (a highly acylated lipoprotein, TLR2/1 agonist; triacylated, that's also shed by the organisms that cause Lyme disease) was causing adverse events that looked exactly like what we know as "chronic Lyme disease" or "post-treatment Lyme disease syndrome”. 

The one priority needed in order to open up the floodgates so all Lyme victims may receive proper recognition, their disability payments, and correct treatment:

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TruthCures is demanding a prosecution.

MULTIPLE CHEMICAL SENSITIVITY (MCS) 

Many patients with these complex immunological & neurological diseases also suffer from MCS which is a debilitating disease leaving people unable to participate in society due to severe reactions to environmental toxins. 

The Specific Challenge of Raising Awareness for ME 

There are an estimated one million men, women, and children in the U.S. suffering from the complex neuroimmune disease ME. The majority of patients are so adversely affected as to render them disabled from any work with 25% totally bedbound! The hallmark symptom for ME is Post-Exertional Neuroimmune Exhaustion (PENE) often called Post-Exertional Malaise (PEM).  Because of this symptom, activity exacerbates the illness.

The reason why ME patients have been suffering without any FDA approved treatments for decades -  some dying young, others bedbound or disabled from work - is due to the negligence and malfeasance perpetrated by the US government health agencies. 

Facts that have caused the sad state of affairs of ME:

  • CDC’s refusing the input of ME stakeholders to officially adopt the proper, historical name, myalgic encephalomyelitis and the repeated attempts to rename the disease with marginalizing names such as chronic fatigue syndrome (CFS), systemic exertion intolerance disease (SEID), and the confusing combination of ME/CFS.

  • CDC’s refusing the voice of ME stakeholders to officially adopt criteria created by ME experts such as the International Consensus Criteria (ICC) or Canadian Consensus Criteria (CCC) while persistently attempting to force overly inclusive criteria created by the government such as the Fukuda Criteria and the IOM criteria. (The IOM criteria have been shown to be as overly inclusive and vague as the Fukuda - read the paper by Dr. Leonard Jason and the paper by Frank Twisk!) 

  • CDC’s continued misinformation and miseducation about the disease on their website as well as in their continuing medical education.  The CDC has stubbornly refused to heed advocates recommendations to make all the proper changes including to remove CBT/GET and despite efforts by many advocates CBT/GET are still recommended by the CDC today - disregarding all the scientifically proven harm it causes ME patients. 

  • HHS’ refusal to properly fund ME.  Although its prevalence is higher than many other diseases, NIH funding for the disease is at the bottom of the list (247th out of 274). Additionally, studies looking at the quality of life of ME patients have shown to be lower when compared to other debilitating diseases like RA, cancers, and diabetes.  There are currently over 6,000 medical papers on ME with important findings, yet investigators lack adequate NIH funding for the much needed large-scale replications. 

The challenge in raising awareness for ME is the need to make the public aware of this government malfeasance.  It is not enough to just educate about how horrible and disabling the disease is.  We need to reveal the ongoing government malfeasance and shame HHS into an apology and positive action!  

How to Raise Awareness 

We need to raise public awareness about the malfeasance of HHS with regard to their negligence, purposeful distortion of the facts, and gross underfunding of ME and all complex immunological & neurological diseases.  This can be accomplished by: 

  • Calling or writing to your U.S. congressional representatives explaining this malfeasance that has been going on for decades and asking them to speak out for you and demand that CDC adopt the name myalgic encephalomyelitis and adopt the ICC or CCC criteria as well as that NIH fund the disease at $250 million a year.   

  • Writing or sharing blogs about these facts (the government does pay attention to blogs!). 

  • Tweeting links to this and other blogs to Francis Collins - @NIHdirector,  Walter Koroshetz - @NINDSdirector,  CDC - @CDCgov, Secretary of HHS, Tom Price - @SecPriceMD 

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MEadvocacy is a project of May12.org, whose mission is to “raise global awareness and education for Complex Immunological and Neurological Diseases (CIND).”   

MEadvocacy continues our mission to get the name, myalgic encephalomyelitis, recognized in the U.S. as it has appeared and been coded for decades at the World Health Organization (WHO).  

Things You can do for May 12: 

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