Tag Archives: AIDS

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.
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My 6th Letter to President Barak Obama

Today, I mailed my sixth letter to President Obama, regarding advocacy for M.E. (myalgic encephalomyelitis).  In this letter, I quoted an excerpt from an M.E. sufferer who lives in the UK.  Her name is: Hayley-Eszti and by clicking on her name, you will be taken to her blog.

Here is the latest letter to the President:

Dear Mr. President;
Yesterday, I celebrated another birthday, and gratefully, have enjoyed a healthy life: however, there are too many people in this United States of America and in the world who, through no fault of their own, suffer pain and weakness.

My focus and advocacy is M.E. (myalgic encephalomyelitis). My daughter is one who suffers from the “invisible” disease that shows no outward signs of illness in sufferers; however, their lives are so affected as to have them cut short. Yes, some die, but the majority of the more than 1 million patients in the US and between 17 and 20 million globally, are relegated to house or bed, or have their quality of life diminished so that, in order to perform a daily task that would be “normal” and taken for granted by most people, performing simple tasks will force them to bed to “recover” from increased bodily pain and great abnormal fatigue.

Below are quotes from a blog, written in honor of International M.E. Week (May 12th), by a lovely 22-year-old UK patient who describes herself as a “bargain hunter/professional sleeper/lover of patterned trousers”:

“M.E. dominates every part of my life and I blog about my journey towards (hopeful) recovery and how I am trying to live a normal(ish) life whilst being a full time ill person. M.E is an illness that leaves a lot of people needing wheelchairs, but they aren’t permanently disabled which can leave a lot of sufferers being accused of faking their disability. Not all disabled people are permanent wheelchair users, and not all disabled people necessarily even use wheelchairs. The sooner that misconception is demolished the better.

Sufferers can (as long as they are well enough to get out of bed) hide those black eyes, put foundation on their pale grey skin, put clothes on, and smile as if nothing is wrong. Weeks prior to a trip out, are normally spent at home resting and preparing just for a few hours of normality, and weeks are spent in pain recovering from that one afternoon too. I think that is why a lot of people underestimate the severity of the illness – the real extent of it is almost never seen. M.E is alive inside of me, but the real me inside is just about surviving; she is definitely not living.”

Mr. Obama, please communicate with the HHS and Ms. Sebelius, letting her know that research to find a cure is important for these sufferers. First, the Canadian Consensus Criteria should be the US accepted diagnosis criteria. The illegal IOM contract to decide a diagnosis criteria is a waste of taxpayers’ money, when there is accepted criteria already. How can members of the panel, who are not experts on M.E., be chosen to decide such an important issue?

Did you know that there are the approximately same number of AIDS victims as there are M.E. patients in the US?  M.E. leaves the patients too weak, and they cannot advocate for themselves; hence, we, who are fortunately healthy and who care for our beautiful children, must do our best to raise our voices.

With Sincerest Wishes,