Tag Archives: ME/CFS

Simply Looking At The Differences Between AIDS and ME

Today, I came across an interesting article, dated January 12th, 2012, written by Vincent Racaniello, at the time Professor of Microbiology and Immunology at Columbia University.  In preface, I have always wondered why the AIDS epidemic drew such huge attention in the public, media, scientific and governmental areas, and ME/CFS was pushed under the rug, so to speak.

Of course, I can’t dismiss the fact that the AIDS epidemic caught the attention of the show business community, since it was in this venue that the infection became a highlighted problem.  Big names in Hollywood and other celebrities, took up the cause to raise funds for research in the 1980s, and the government was caught up in the hurricane-like fanfare.

Acknowledging that the HIV infection was extremely contagious to others, and that, in the beginning of the outbreak in the US, almost half of the patients died rather quickly; patients with Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome (a misnomer and huge insult to patients) are not contagious to other people.  IMHO, ME sufferers are contagious to their own bodies; bodies that are losing the raging battle within.

But, I digress.  The article, part of which is quoted below, states very clearly, the differences between AIDS and ME/CFS as diseases, and how the scientific community and the US government departments (mostly the CDC in the beginning) did not take the seriousness of ME/CFS to heart.  At the same time as the outbreak of AIDS in the 1980s, the CDC diagnosed ME/CFS as a psychological illness, dubbed it “CFS,” and diverted research funds to other areas.  Until then, it was correctly called ME – Myalgic Encephalomyelitis, by the World Health Organization (WHO).

Here is the quote:

In contrast to their excellent work on AIDS, the CDC has stumbled when tackling CFS. The CDC has dismissed evidence that CFS is an organic disease, and spent funds on investigating psychiatric and trauma-related causes, rather than infectious origins. The agency also diverted funds designated for CFS to other programs. These and other missteps alienated the CFS patient community—the opposite of what the agency accomplished with the AIDS community.

CDC

In part due to the standardized case definition of AIDS, identification of a candidate virus was relatively rapid. Determining its role in the disease was facilitated by the development of a blood test, which could be used to prove that HIV-1 caused AIDS. The relationship between HIV and AIDS was further confirmed by the development of antiviral drugs that inhibited viral replication and helped alleviate the symptoms of the disease.
Why have investigators failed to identify a virus behind CFS? (It is not due to the lack of appropriate technology; this has improved substantially since the 1980s with the development of polymerase chain reaction and rapid DNA sequencing.) One explanation for this dilemma is that an infectious agent does not cause CFS. However, there is plausible evidence for an infectious etiology, including observations that the disease is known to occur in outbreaks. Furthermore, in many cases the onset of symptoms appears to begin with a flu-like illness. Additionally, CFS is a heterogeneous disease, and may be caused by several different agents or a combination of viruses and non-infectious conditions. Another possibility is that an infection initiates an immune response that spirals out of control, leading to CFS symptoms. This scenario implies that at least some CFS patients have underlying deficits in immune regulation. If that’s true, it will be very difficult to identify the virus involved because it will likely have been eliminated from patients’ systems by the time CFS symptoms become apparent.
In retrospect, it is clear that the properties of AIDS made it an easy disease to understand. While the path to understanding CFS has been clouded by non-scientific issues, in the end the main reason why we do not understand this disease is because it is extraordinarily complex. But that never stopped a good scientist.
The only thing that stops a good scientist is the lack of funding.

A Tsunami of Disease?

We have a crisis in medical research.  Llewellyn King speaks of the great importance for our government to fund vital research to find an unquestionable biomarker, a treatment and a cure for ME.  Millions of people have had their lives taken away by this disastrous disease; where once, they were active members of society, pursuing their careers and fulfilling their life’s dreams, and then to be struck down by ME.

Let’s stop the indifference of our government.  We need to continue to send letters, and post notices on social media to keep ME (myalgic encephalomyelitis) in the forefront.

Mr. King, in the video, eloquently puts forth his plea to have more government funding for the research that has already begun.  It must not stop.  It is imperative that it continue.

Statement from Stanford University School of Medicine on Symptoms of ME/CFS

A statement cited from the Stanford University School of Medicine on the blog, “Living With M.E.” said of the illness known in the United States as ME/CFS was: “Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.”

Quite an accurate, albeit, brief description, without going into the issues in a more deeply manner.

When Stanford University speaks, the HHS, NIH, CDC, the IOM and all those other departments under HHS charged with direction and regulation of the health of citizens of the United States, should listen.

blue ribbon for me

 

[image from bingdotcom]

 

Ryan Prior, Medical Student at Stanford University

It is becoming more and more evident that there are so many more individuals than ever thought, who have the debilitating chronic illness, ME.  Since last year, the number of assumed cases of ME has gone from 1 million to up to 4 million in the U.S., and from 17 million up to 20 million worldwide!

Here is a young medical student, at Stanford University, named Ryan Prior, relating in a short dialogue, his own experience with ME.

Although he is supposed to be “recovered,” Ryan mentions the daily medications he is still taking and gives himself weekly injections and there is also a monthly IV that he gets.

So, his “recovery” really means that, as of now, he is better able to lead a more “normal” life, but with medical support.

 

Brain Scans Yield Clues to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Findings might help doctors diagnose the baffling condition.

 

It’s not a secret that ME/CFS is a very difficult illness to diagnose.  Patients presenting multi-symptom complaints are often misdiagnosed or labeled as hypochondriacs.

There are clear differences in the brains of people with ME/CFS and the brains of healthy people, new research indicates.  One of the many symptoms is inflammation of the brain, shown by MRIs.

ME/CFS affects up to 4 million people in the United States alone.  This assessment (updated from a year ago’s 1 million) is reported by the U.S. Centers for Disease Control and Prevention (CDC).

The History of M.E (Myalgic Encephalomyelitis)

The History and Present of M.E (Myalgic Encephalomyelitis)

[Myalgic Encephalomyelitis]/ Chronic Fatigue Syndrome is one of the greatest scientific and medical challenges of our time,” said the study’s senior author, Dr. Jose Montoya, professor of infectious diseases and geographic medicine, in a Stanford report.

ME/CFS patients in the U.S. number more than MS and AIDS patients added together, yet, government funding for MS and AIDS research has been 4 times that of ME/CFS in recent years!

Despite the HHS, CDC, NIH et al’s negative and misguided attitudes of the last several years, and particularly the problems with IOM (Institute of Medicine) and P2P (Pathways to Prevention) Workshop, I have the distinct impression that there is more focus on finding a solution to the problems of ME/CFS than ever before.

Research in Nevada, and California is getting ramped up through mostly private funding.  If we depended upon the HHS’s funding up to now, nothing would be progressing in the necessary research; in fact, HHS has been doing everything it can to prevent progression in research.  My past posts on M.E. Advocacy will shed light on that.

The very active WordPress, Blogspot (Google) blogs and Twitter accounts of ME/CFS patients and advocates that I find, proves that we (ME/CFS patients and advocates) are not sitting on our hands in this fight.

As sick as so many patients and patient-advocates are, there is an inner strength (digging very deep down to find) that keeps everyone pushing to their limits and beyond.  And, they suffer physically for it for many days, weeks, months or even years.  More than 3 decades of being pushed aside and told “it’s all in your head and go see a psychiatrist for your depression” means it must stop.  NOW.

 

[Image from bingdotcom]

 

 

 

 

 

 

 

Hopeful News: Dr. Lerner’s Success on his Longterm Antiviral Treatment

This report, published by the Massachusetts CFIDS/ME & FM Association, is an eye-opener regarding Dr. Lerner’s treatment of ME/CFS patients who were suffering from remaining active viruses (non-latent) after initial infections.  The immune system couldn’t fight strongly enough to defeat the viral infections.

Dr. Lerner treated small groups (not controlled) who suffered with CFS/ME; some with EBV (Epstein-Barr Virus); some with cytomegalovirus (HCMV), or human herpes virus-6 (HHV-6); and some with both.

Dr. A. Martin Lerner

Dr. A. Martin Lerner

His treatment, over the course of approximately 2 years, consisted of antivirals.  These patients exhibited different stages of improvement, and many were able to resume an active, normal life, after suffering years of debilitating illness.  Cardiac symptoms also improved.

Dr. Lerner is an infectious disease specialist who became ill with CFS/CFIDS/ME.  In 1986 he began having troubles with dizziness and severe fatigue.  A visit to the Cleveland Clinic found his heart was found to be grossly dilated.  10 years later he’d figured out how to treat himself and recovered.

Prior to becoming ill, he had completed decades of research of various infectious diseases.  Over the subsequent decades, his research has concentrated on the viral aspects of CFS/CFIDS/ME; the use of antivirals in its treatment; and the effects of viral infections on cardiac activity in CFS/CFIDS/ME patients.

Patients underwent lab tests, at 4-6 week intervals, in order to be checked for signs of toxicity.  Different organs in the body (particularly the liver) could be negatively affected.  Close monitoring assisted with adjustments in the dosages of these antivirals and/or substitutions from one medication to another.

Dr. Lerner’s work is reason to hope for improvement in ME/CFS patients’ lives.

 

 

 

Dr. Collins, Please Continue NIH Efforts for M.E.

In keeping with my advocacy for ME (myalgic encephalomyelitis), I have made available a letter (see link below) addressed to Dr. Collins, Director of the National Institute of Health (NIH).  It is signed by eleven members of Congress, dated March 2014.  It reminds Dr. Collins of the supportive recommendations for research and funding for ME and CFS, promised by NIH back in 2011.

We advocates will continue to attempt to bring to the forefront, recognition that M.E. is an invisible, multi-symptom, neuroimmune, chronic illness that is changing and taking, many lives of over 1 million of our nation’s citizens and between 17-20 million sufferers globally.

Congressional-letter-Dr.-Collins-March-2014-1-1

 

 

Mark Your Calendars!

Advocates are promoting ME (myalgic encephalomyelitis) Awareness Day. ME is a misunderstood, neurological disease which causes multiple symptoms and which also can lead to death, when very severe. Please read and find out about it, and spread the message, please.

kraftycatcreations

From: www.ProHealth.com
By Erica Verrillo •  April 20, 2014
May 12th! This Is Your Day!

This year marks the 30th anniversary of the Incline Village outbreak, making this a special May 12th for people with ME/CFS.

For those who are not familiar with the history of May 12th International ME/CFS and FM Awareness Day, it was started in 1992 by Tom Hennessy to promote awareness of chronic neuro-immune diseases, including ME/CFS, FM, MCS and GWI.  Tom chose May 12th as ME/CFS Awareness Day to commemorate the life of Florence Nightingale, who suffered from an illness much like ME/CFS (probably brucellosis). May 12th is her birthday.

Tragically, Tom died in September 2013 after a 25-year battle with ME. He was 59 years old.

Why hold an awareness day?

International awareness days are intended to draw attention to specific medical or ethical problems. They are particularly important for diseases that are poorly understood by…

View original post 880 more words

Important ME Research That You Should Be Aware Of

The more people this message reaches, the better. It is imperative that somewhere, down the line, someone will make a difference.

kraftycatcreations

Widespread neuroinflammation

Posted on 9 Apr 2014 by www.meresearch.org.uk


Transaxial slice of the brain taken with PET, by Jens Langner
There are good reasons for thinking that central nervous system pathology is important in ME/CFS, and some indications that inflammation of the brain (neuroinflammation) might be involved. However, proving the existence of neuroinflammation requires specific neuroimaging methods, and these had never been applied to ME/CFS patients – until Japanese researchers bit the bullet.

The team at Osaka City University in Japan, which has been studying ME/CFS for many years, have used PET imaging to try to obtain direct evidence of neuroinflammation. In essence, they measured the density of the ‘translocator protein’ (TSPO) produced when certain brain cells are activated – it’s the activation of these cells which indicates that inflammation is taking place. In this case, the brain cells were microglia (thought to be the main form of active immune defense in the central nervous system) and astrocytes (the…

View original post 321 more words

Letter to President Barak Obama

I haven’t mentioned in any of my blogs that I am an advocate for patients suffering with the debilitating chronic illness commonly referred to as “ME/CFS.” I prefer to use “ME.”  “CFS” is a misnomer, and it is hoped that it will be dropped from the identifying name of this disease.

ME stands for myalgic encephalomyelitis.  M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems.  Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise (PEM), cognitive problems (such as short-term memory loss and concentration difficulties-commonly referred to as “brain fog”), muscle and nerve pain (including fibromyalgia), muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to foods, alcohol, chemicals and medicines.

I’ve been sending monthly letters to President Obama, usually referring to the HHS (Department of Health and Human Services), headed by Kathleen Sebelius.  This department oversees the NIH, the CDC, the FDA, and others, which have a great impact on how our government is supposed to care for the health of our citizenry.

Here is the latest one:

President Barack Obama
The White House
1600 Pennsylvania Avenue
Washington DC 20500

Re: The Department of Health & Human Services; National Institute of Health

Dear Mr. President;

Following are comments by ME/CFS patients and their caregivers, responding to a blog:
“The problem is that there is no leadership and accountability within the government, either by elected or non-elected officials.”
“This sort of incompetence continues throughout because no one in the government actually cares. It is just hand-wringing.”
“Meanwhile it is costing the government tens of billions of dollars in lost taxes and welfare.”
“I think a major reason why the government doesn’t want to help those of us with ME/CFS is financial. The officials do not want more people getting medical coverage from Medicare and Medicaid nor does it want more people to receive federal disability benefits. And the insurance companies do not want to pay for medical care related to this disease.”
“This is a time when disability benefits are being questioned for many people, if not outright denied, and when it’s harder to obtain Medicare and Medicaid. In fact, Medicare payments to doctors and coverage is being cut back somewhat.”
“The federal budget has been cut. Funding for agencies, which do medical research has been decreased overall for our disease and others. This isn’t a good time for medical research.”
“When the government shutdown occurred, a lot of programs were cut back. It was revealed by the media that funds had been cut back for the CDC and FDA for programs which monitor Salmonella and other food-borne diseases and for inspections of meat/poultry plants.”
“Our health is not a priority.”
“Finances are definitely a part in this government/insurance companies and combined interests.”
“Getting to the bio markers for ME\CFS has the potential of opening up that proverbial can of worms requiring insurance and disability payments AND proper treatment of a very physically sick large patient population group. AND, with that, the demand for answers from HHS, CFSAC, CDC and NIH and affiliations as to WHY ME/CFS has been largely ignored being LEFT to infect/affect/debilitate millions globally. AND, further questions–WHO has led and who continues to lead the movement AGAINST getting to the scientific answers to ME/CFS? WHY this discrimination? WHY the secrecy?”
“Finances for ME/CFS are merely a surface excuse and only part of the whole problem in lack of transparency and accountability regarding ME/CFS. For example, there is a budget of $16M annually allocated for male pattern baldness.”
“There is reasonable research funding available and allocated to many diseases. In contrast, ME/CFS receives pitiful funding; and of that $1M plus is being needlessly and foolishly wasted on the IOM (Institute of Medicine) contract instead of going to much-needed biomedical research.”
“I do think the government does not want to recognize one more disease because of the funding and research. I believe there was resistance to funding AIDS research and treatment for quite awhile. I think that the AIDS activists, especially ACT-UP and others who were really public, pushed the government to do the research and fund it.”
“I could also surmise that because this is primarily a woman’s disease (not all, I know), that there is even less interest in funding research.”
“But I agree it isn’t only finances; it’s politics. It’s lack of interest in taking on a new challenge, in breaking with the status quo. The disease is an enigma. It would take a real concerted, unified research program to find the causes, biomarkers and treatments. Does the government want to do this? Not really.”
“Dr. Ian Lipkin, virologist, is asking patients and relatives to donate for his research. This is crazy. The government could do it, and has tons more funds than our [ME/CFS] community has, obviously. It could easily give him $1 million, even $10 million.”
“I cannot understand at all how anyone could think that all of HHS’ malfeasance and nonfeasance isn’t intentional, since the whole thing has been a bad impression of a parody of a poor imitation of trying to make progress.”
I hope the above comments, which were in response to a blog, will make it obvious to you that this is an extremely important subject, affecting over a million citizens of the United States, and over 17 million citizens of the world.
Very Sincerely,

To date, I haven’t received a response, and I don’t expect to receive any.  But, we have to go forward and hope.  🙂

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