Friday, October 09, 2009

ME/CFS and the Retroviral Elephant

In the ME/CFS community, since yesterday, there has been a swell of jubilation. This may seem odd to a lot of people considering that researchers just found something in our blood similar to HIV. None of us are shocked by this news because we've always known we had something like HIV, something serious and deadly, but we have had to face a surreal social gaslighting while simultaneously weathering the horror of a terrible, life-destroying illness. Dr. Mark Loveless once said that an ME/CFS patient feels every day significantly the same as an AIDS patient feels two months before death. Now that statement holds more weight: ME is to AIDS what vegetative is to death.


The discovery of a new retrovirus called XMRV in ME patients is the biggest news in the history of the ME epidemic (and yes, I'm fully claiming the term ME now, as all "CFS" patients can do, now that as Hilary Johnson says "Our Vietnam War Ended Today" and we can strip the shackles of this government's attempts to squelch, misname, deny, and otherwise ignore our epidemic). News of the ME/XMRV connection has spread around the world like wildfire. Stories have appeared in just about every major media outlet. ME/CFS lists are buzzing. Patients who have written about our lives, screamed about these horrors, fought for medical attention, and died due to medical and social and governmental ignorance and suppression now have our day.

Along with all of the latest news stories, I think it's a good time to revisit Neenyah Ostrom's 1993 book America's Biggest Cover-Up, which outlines fifty different physiological similarities between ME/CFS and AIDS. This book was published just a year after I came down with the "flu-like" (read: tsunami-like) illness that changed my life forever. When the "flu" hit, I was going through graduation proceedings at Oberlin College and then headed on a cross-country trip to San Francisco with my friend Jody and my partner Rachel. Jody and Rachel both still remember my surreal descent into a complex of symptoms so inexplicable I quickly felt like I was dying. While they were hiking the wilderness in New Mexico and Arizona, I was crumpled in the back of my car, dizzy and nauseous and light-sensitive and unsure if I would live. I was 23 years old.

Jody later wrote about this confusing descent for my disability hearing: "It was during the summer of 1992 that I first became aware of the severity of Peggy's illness. I was moving out to San Francisco with Peggy and another friend, and we had decided it would be fun to take some time and drive across the country in two cars. So for almost two weeks we were together 24-hour days. Peggy was fairly incapacitated throughout the trip from a combination of headaches, nausea, and flu-like symptoms. At the time I think we chalked it up to an allergic reaction to something in the Southwest, and encouraged her to push herself to keep up. At some point during the trip it became clear to me that she wasn't just being lazy or tired, but that she was physically unable to keep up and was already straining herself in a dangerous way."

Once we arrived in San Francisco, in June of 1992, I faced a city that had been decimated by over a decade of economic struggle (that was the year Bill Clinton was elected after 12 years of Republican government) and AIDS. While AIDS had informed my whole sexual development, since I hit puberty almost exactly when it hit the public sphere, I was not prepared for the reality of AIDS in San Francisco. Fifty percent of the gay men in the city were said to be HIV-positive then. An air of overcompensation permeated the Castro, where it was somewhat rare to see men in wheelchairs with visible lesions, though they did appear briefly before disappearing altogether, perhaps on a last hoorah, sometimes pushed by other gay men who were obviously just cruising on the job, smiling and flirting with other men as they pushed a sickly, dew-eyed, emaciated man up that terrible hill.

I worked briefly at the top of that hill, at Castro and 19th. It was my first job after getting sick and I was far too ill to keep it, at a health food store. The HIV positive guy who hired me, upon looking at my resume that stated that my hometown was Normal, Illinois, joked "you could run for President too!" since of course Clinton was hyping his origins of Hope (Arkansas). Another HIV-positive guy who worked there called his illness "the hiv," rhyming "hiv" with "give." Those guys were much more healthy than I was, as were most of the HIV-positive men who came into the store with special discount cards they got for being HIV-positive. They used these cards to buy weight gain powder, and other supplements that I noticed carefully, often buying the same ones after they left.

I could barely stand up. In fact, being upright had become almost impossible due to increasing dysautonomia, so having a job that required standing for eight hours at a time was not something I could continue. I somehow made it through a little over a month there, working only four days a week with chest pains and flu-like symptoms and a skyrocketing heart rate, and sleeping most of the rest of the time. During that month, I saw my first ME/CFS doctor, who was actually a well-known AIDS specialist -- Jon Kaiser, MD. I had gotten his name thanks to a brochure for the CFIDS Foundation that had been sitting in Lyon-Martin Health Center when I went there right after realizing I was too sick to go on, a few weeks after my arrival in San Francisco. Interestingly, Lyon-Martin had been associated with an earlier ME/CFS cluster outbreak -- which I did not learn until reading Osler's Web -- but the only residue of that outbreak was this little brochure in the entryway. The doctor at Lyon-Martin was useless: she told me that I would be better in a few weeks and should come back for a Pap smear.

Dr. Kaiser, the AIDS doctor, did not diagnose me with ME/CFS -- he ran up lots of expensive tests I could not afford and bankrupted me, then tried to sell me affirmation tapes. I didn't know at the time that the CDC required patients to be symptomatic for six months or more for an official diagnosis. Dr. Kaiser wrote that I had "fatigue and chronic pharyngitis" in my chart, but interestingly did prescribe me his typical regimen for immunocompromised ME/CFS and AIDS patients. Perhaps most notable about this was the fact that he gave ME/CFS and AIDS patients most of the same supplements. They were the ones the HIV-positive guys bought at the store, such as this product called Resist. I was careful to buy mine (using my employee discount) when nobody else in the store was watching, lest they think I was hiding a secret HIV status. I could not afford to see Dr. Kaiser more than a couple of times, and then spent the next two and a half years in diagnostic limbo until finally getting diagnosed with ME/CFS by a Harvard-trained infectious disease specialist (who also saw a lot of AIDS patients) on the East Coast. That was in 1995, right before I went on disability and my work days were over for good.

I was very aware then that I had something AIDS-like, but had tested negative on HIV tests -- and I had had two of them over the course of a year just to be sure (my college was known for bisexual experimentation of all genders). My jobs after the health food store did not help me avoid the reality of AIDS: it was always, in San Francisco pre-cocktail drugs, in everyone's face. At the same time, as a 20-something, I didn't relate to the stories of loss told constantly by the 30-somethings and 40-somethings who had lived in the city for years and lost most of their friends. I just knew I was deathly ill too, and there was no place for me -- no place for people who had non-AIDS. In my two and a half years in San Francisco, while I struggled to make income despite being too sick to work at all, I worked with others who had been touched by AIDS. One job was for an HIV-positive psychotherapist who led support groups for HIV-positive men focusing on survival strategies. He paid me to do library research to compile a bibliography on all that had been written about the characteristics of long-term survivors of HIV and AIDS. He lived in a gorgeous, open, lonely-seeming apartment, where I remember seeing a stack of humorous 'zines titled "Diseased Pariah" on a ladder that seemed to go nowhere.

I also worked for a blind writer who had lost her beloved son to AIDS. Her son's wife had also died of AIDS, and the writer -- then in her 80s -- had stepped in to raise her orphaned granddaughter just as her blindness was developing. It was a remarkable story that she was too traumatized to tell the whole time I worked with her -- I learned the story from the gay guy who had hired me for the job, and later from an oral history tape the writer had given me to transcribe. A fascinating former radical who told me she had once had a run-in with the McCarthy committee, the writer lived on Haight street, perched in the third-floor apartment that she rarely seemed to escape. There, not far from the once-explosive Haight-Ashbury district where so many radical politics and arts were forged, blind and tamped with grief and left with only a paper menu from her son's old restaurant, she seemed emblematic of all that had gone wrong with the idealistic city of San Francisco.

I tried to hide from all of them how sick I was, because I had quickly learned that admitting illness in San Francisco would limit job opportunities. But I also sensed -- and perhaps I was wrong -- that they knew I was one of them, touched somehow by AIDS but not in the way they thought. I could tell that they sensed the gripping fear at the edge of my frailty, that perhaps they noticed how quickly I was losing weight, or the pallor in my cheeks. The writer, despite being blind, seemed to see right through everyone, and I found myself using body language that blocked her off when I was with her, so afraid she would do a third eye penetration of the truth that I was hiding. She was sad and a little angry when I moved away, so heavy already with loss, and I still wonder now if she knew what I didn't know then -- that I would never be well enough to return to San Francisco and would not see her again before she died.

After that, in Providence, I briefly taught a writing workshop out of my apartment for people living with chronic illness. One participant with a teenager with AIDS, whose story was absolutely wrenching and it seemed like he would not live to see his twenties. A couple of years later, I ran into him -- after the dispersion of the AIDS cocktail drugs. He was elated, about to travel to San Francisco -- his T-cells were great, his viral load was almost nonexistent now. How was I? he asked. I gently told him how my health was plummeting.

What is utterly mind-blowing to me now was how much the writings in those early days of my illness reflected an awareness of the ME/CFS-AIDS connection, and yet the research on retroviruses was, at the time, sidelined in favor of other avenues. I wrote in the Introduction to my book Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome about the SPECT scan research published by Dr. Anthony Komaroff and his colleagues in 1994, in which he compared SPECT scans of ME/CFS patients to those of people with unipolar depression, AIDS dementia, and a control group -- and ME/CFS brain scans looked almost identical to those of patients with AIDS dementia.

Perhaps most astonishing to me now is this quote I read in Ostrom's book, in which she talks about Dr. Paul Cheney's observations at the time about his ME/CFS patients who were dying of opportunistic, AIDS-like infections:

"Dr. Cheney described the immune system damage seen in CFS patients for the Food and Drug Administration in May 1993. Dr. Cheney told the FDA that five of his CFS patients had died during the preceding six months. Two of these patients committed suicide, which is all too common among CFS patients. But three of Dr. Cheney's patients who died, like AIDS patients, succumbed to overwhelming infections that their damaged immune systems couldn't fight off. But Dr. Cheney's CFS patients, like the ICL patients [those with HIV-negative, AIDS-like disease], appeared not to be infected with HIV, even though they developed AIDS-like immunodeficiencies and, in some cases, life-threatening opportunistic infections."

I have spent the last five years nearly dying from opportunistic infections, including a bartonella infection that took an AIDS-like course in my body and produced rampant cardiac and neurological damage, so this quote rings heavily for me. I have been in ME/CFS hell for seventeen years, and in the past five it has become more and more harrowing as I have flirted increasingly with death, particularly over the past year (I have finally recovered enough to write this blog post -- barely). I have become -- and hopefully will be well enough to write more about this at some point -- like the other patients who are dying or have died, and who look exactly like AIDS patients. It would be hard to look at pictures of some of my wasting ME/CFS friends and deny the ME/CFS-AIDS connection. Yet as I pleaded with an idiot doctor as I was dying of a heart infection from bartonella, begging him for antibiotics, and moreover showing him articles about the behavior of bartonella infections in HIV-positive patients to explain why I was so sick, he ignored me until I almost died.

Now, on his current blog, Dr. Cheney is taking a more understated approach than he did in the early '90s, but his statements seem to imply that bartonella -- as a common coinfection of Lyme -- may be just another opportunistic infection that attacks ME/CFS patients because of a retrovirus-damaged immune system. "I have not really seen what I would call a pure Lyme case but many with CFS and a positive Igenex WB assay and antibiotic failure for chronic Lyme," writes Cheney about the XMRV virus discovery.

Dr. Cheney may seem nonplussed by this new discovery since he has witnessed these connections all along. As I wrote about the ME/CFS-AIDS connections in my essay "The Paradox of Lost Fingerprints" in Stricken:

"It cannot be underestimated how much AIDS politics both eclipsed and influenced the lives of CFIDS patients. Many writers have also pointed out bizarre and alarming connections between the two illnesses -- such as similarities in brain scans and elevated HHV-6 titers. Dr. Paul Cheney, though, noticed what is perhaps the most remarkable correlative. When he entered data for 400 CFIDS patients into a computer, noting their time of onset and other factors, he found that CFIDS and AIDS cases have occurred -- over time -- at almost parallel rates of growth. But AIDS medical psychology also dramatically affected CFIDS patients. In the rhetoric of the AIDS years, people were taught to view illness as an outcome of behavior. Every illness in this era was shaped by the furor of AIDS politics. Even [Elaine] Showalter talked about CFIDS and Gulf War syndrome as 'sickness lifestyles.' This description was not unlike the homophobic AIDS rhetoric that confused gay 'lifestyle' with succeptibility. Once contagion was equated with behavior, and identity politics took over, pairing of illness and identity was almost inevitable. A strange contradiction emerged in this era when words such as 'multiculturalism' entered the public arena -- the need to identify, along with the need to believe in the transcendence of inborn identity." [117]

While AIDS patients got drug cocktails, ME/CFS patients got metaphors -- often offensive, derisive, and soul-crushing metaphors. Those metaphors and the cruel cultural bullying around patients can certainly help explain the two patients Cheney mentioned who committed suicide: now we finally have an explanation for the other three who died of AIDS-like opportunistic infections. The patient-blaming approach can also be blamed for other deaths that weren't suicides, such as the tragic death of Sophia Mirza who was forcibly sectioned to a psychiatric hospital for having severe ME and never recovered from her hospital stay, ultimately dying. As Ostrom wrote in 1993, "
Is it possible that a mistake has been made in formulating the definition of AIDS? Is Chronic Fatigue Syndrome actually part of the AIDS epidemic? If this is even a remote possibility, why haven't other books been written about it? Why isn't every health reporter in the country writing about it, every investigative reporter investigating? The answer, I believe, is pretty simple, and it is a problem that has dogged the AIDS epidemic since the beginning: denial." I think we can now acknowledge that people like Mirza have died from this denial, and hopefully prevent more suffering and death.

At the first free medical clinic in America without a religious affiliation -- the Haight-Ashbury Free Clinic -- the motto "Health care is a right, not a privilege" was popularized, the year before I was born. It is not too late to actualize that motto for ME/CFS patients who have spent decades dealing with biased medical care. My blind writer friend on Haight Street said it best to me when she told me how much she hated the parable of the blind men and the elephant. She felt like that parable was an insult to the blind, who actually cultivate their senses, who look further to see the elephant that was there all along. She made it seem so simple, to cultivate awareness of the obvious, to deal with exactly what is there. Hopefully the medical establishment will listen now, to this retroviral elephant that can't be ignored.




NEWS COVERAGE


Oslers Web.com





By Hilary Johnson









Action for ME



Researchers find virus in blood cells of CFS patients


09 October 2009


Researchers at the Whittemore Peterson Institute in Reno, USA have
identified genetic material (DNA) from a mouse virus - murine leukaemia
virus-related virus (XMRV) - in 68 out of 101 CFS patients (67%)
compared to 8 out of 218 (3.7%) of healthy people.



Further
blood tests showed that more than 95% of CFS patients have antibodies
to XMRV, indicating they had been infected with the virus, which may
then have lain dormant in their DNA.

Dr Judy Mikovits,
research director, Whittemore Peterson Institute, is testing a further
500 blood samples collated from patients diagnosed with CFS in London.

Although the sample is small, the results are very promising.

Sir Peter Spencer, CEO of Action for M.E., the UK's biggest M.E. charity, says:

"It
is still early days so we are trying not to get too excited but this
news is bound to raise high hopes among a large patient group that has
been ignored for far too long.

"If the researchers can go
on to prove a definitive cause and effect between this retrovirus and
M.E., it will make an enormous difference to 250,000 British men, women
and children who have M.E. in this country."

__________________________________________________________


Reuters News





By David Morgan


WASHINGTON (Reuters) - A virus linked to prostate
cancer also appears to play a role in chronic fatigue syndrome,
according to research that could lead to the first drug treatments for
a mysterious disorder that affects 17 million people worldwide.


Researchers found the virus, known as XMRV, in the
blood of 68 out of 101 chronic fatigue syndrome patients. The same
virus showed up in only 8 of 218 healthy people, they reported on
Thursday in the journal Science.




_________________________________________________________



New York Times



    XMRV
    is a retrovirus, a member of the same family of viruses as the AIDS
    virus. These viruses carry their genetic information in RNA rather than
    DNA, ...October 9, 2009 - By DENISE GRADY - Health / Research

__________________________________________________________



BBC News Online



ME Virus Discovery Raises Hopes


Page last updated at 09:11 GMT, Friday, 9 October 2009 10:11 UK



US scientists say they have made a potential
breakthrough in understanding what causes the condition known as
chronic fatigue syndrome (CFS) or ME.


Their research in the journal, Science, suggests that a single retrovirus known as XMRV does play a role in ME.


They found the virus in 67% of ME patients compared to under 4% of the general population.



__________________________________________________________


The Independent



Leaing Article - Chronic Neglect





The symptoms are disabling
tiredness, irritable bowels, intense headaches, depression and
cognitive dysfunction. Yet for years many doctors argued that Chronic
Fatigue Syndrome didn't exist. They refused even to dignify it with the
name previous sufferers preferred – Myalgic encephalomyelitis. ME, they
said, was just "me" writ large and dismissed it as yuppy flu. In the
event the flu has lasted longer than the yuppies did. Some four million
people suffer from it in the United States alone.



Now two potential avenues
for cures come along at once. Researchers in Utah claim to have
discovered the gene involved. Another team in Nevada have found
compelling evidence that a retrovirus, like HIV, might well be
implicated.


__________________________________________________________




The Independent



Has science found the cause of ME?


Breakthrough offers hope to millions of sufferers around the world

By Steve Connor, Science Editor



Scientists say they have made a dramatic breakthrough in understanding the cause of chronic fatigue syndrome –


a debilitating condition affecting 250,000 people in Britain which for decades has defied a rational medical explanation.


The researchers have
discovered a strong link between chronic fatigue syndrome, which is
sometimes known as ME or myalgic encephalomyelitis,


and an obscure retrovirus related to a group of viruses found to infect mice.


___________________________________

Bloomberg News




Virus Linked to Prostate Cancer Is Also Tied to Chronic Fatigue


By Rob Waters


Oct. 8 (Bloomberg) -- A virus linked to aggressive forms of prostate cancer may

also be tied to chronic fatigue syndrome, a condition that saps people of energy

for months or years.


The virus, XMRV, was found in the blood of two-thirds of a set of tissue samples

taken from people with the condition and 3.7 percent of a group of healthy

individuals, according to a study published today in the journal Science.





_____________________________________________________________


Washington Post




Virus Associated With Chronic Fatigue Syndrome


Scientists have found evidence that a virus may play a role in chronic fatigue

syndrome.


Vincent C. Lombardi of the Whittemore Peterson Institute in Reno, Nev., and

scientists elsewhere studied 101 patients with chronic fatigue syndrome, a

baffling, debilitating and controversial condition that affects an estimated 17

million people worldwide. They discovered that 68 of the patients -- 67 percent

-- had a virus in their blood known as the xenotropic murine leukemia

virus-related virus or XMRV. Only eight of 218 similar subjects who did not have

chronic fatigue syndrome -- 3.7 percent -- had the virus in their blood, the

researchers report in a paper published online Thursday by the journal Science.




_____________________________________________________________


Reno Gazette Journal



Good quote from Anne Whittemore:



"Now we have scientific proof that this infectious agent is a significant factor

in ME/CFS," Annette Whittemore said. "Patients and their doctors will soon have

a blood test to verify their diagnosis and provide the answers that they've been

seeking.
"






_____________________________________________________________


Science News



Retrovirus might be culprit in chronic fatigue syndrome

People with the condition are much more likely than others to harbor a

little-known pathogen

By Nathan Seppa



The long, fruitless search for the cause of chronic fatigue syndrome has taken a

curious turn. Scientists report online October 8 in Science that an obscure

retrovirus shows up in two-thirds of people diagnosed with the condition. The

researchers also show the retrovirus can infect human immune cells.





_____________________________________________________________



the-scientist.com


Viral cause for chronic fatigue?

Posted by Edyta Zielinska




_____________________________________________________________




New Scientist







Chronic fatigue syndrome linked to 'cancer virus'
_____________________________________________________________



Google News



Scientists link chronic fatigue ailment to retrovirus




_____________________________________________________________



National Institute of Health



_____________________________________________________________


Scientific American



News - October 8, 2009


Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis

Recently implicated in some severe prostate cancer patients, the retrovirus XMRV

has now been found in many with chronic fatigue--changing the landscape for

diagnosis and possible treatment


_____________________________________________________________


Yahoo News



Study isolates virus in chronic fatigue sufferers

By David Morgan David Morgan 55 mins ago


WASHINGTON (Reuters) – A virus linked to prostate cancer also appears to play a



role in chronic fatigue syndrome, according to research that could lead to the

first drug treatments for a mysterious disorder that affects 17 million people

worldwide.


Researchers found the virus, known as XMRV, in the blood of 68 out of 101



chronic fatigue syndrome patients. The same virus showed up in only 8 of 218

healthy people, they reported on Thursday in the journal Science.



_____________________________________________________________


Nature.com



Virus linked to chronic fatigue syndrome



Prostate cancer pathogen may be behind the disease once dubbed 'yuppie flu'.




Lizzie Buchen




A study on chronic fatigue syndrome (CFS) has linked the mysterious and



controversial disease to a recently discovered retrovirus. Just last month

researchers found the same virus to be associated with aggressive prostate

tumours.

Chronic fatigue syndrome is seen as a serious but poorly defined

disease.PUNCHSTOCK


CFS is marked by debilitating exhaustion and often an array of other symptoms,



including memory and concentration problems and painful muscles and joints. The

underlying cause of the disease is unknown; it is diagnosed only when other

physical and psychiatric diseases have been excluded. Though the disease's

nebulous nature originally drew scepticism from both doctors and the general

public, most of the medical community now perceives it as a serious — if poorly

defined — disease.


Now Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease



in Reno, Nevada, and her colleagues think they have discovered a potential

pathogenic link to CFS. In patients with the disease from different parts of the

United States, 67% were infected with a retrovirus known as XMRV. Less than 4%

of controls carried the virus.



_____________________________________________________________



Wall Street Journal



Retrovirus Linked to Chronic-Fatigue Syndrome


By AMY DOCKSER MARCUS



Researchers have linked an infectious virus known to cause cancer in animals to



chronic-fatigue syndrome, a major discovery for sufferers of the condition and

one that concerned scientists for its potential public-health implications.



_____________________________________________________________



Emerging Health




Emerging retrovirus turns up in new patients



Novel virus can spread between people, may lie behind other common illnesses


Electron micrograph of xenotropic murine leukemia virus-related virus (XMRV) in



the blood of a chronic fatigue syndrome patient.


Source: Whittemore Peterson Institute



A retrovirus first seen in prostate cancer patients three years ago has now been



discovered in the blood of people suffering from chronic fatigue syndrome (CFS),

Vincent Lombardi and colleagues report1 today in Science. The virus can be

passed on from person to person and may be linked with other health conditions,

experts say.



_____________________________________________________________


www.physorg.com


Scientists link chronic fatigue ailment to retrovirus

October 8th, 2009 in Medicine & Health / Diseases





_____________________________________________________________







WHITTEMORE-PETERSON INSTITUTE





__________________________________________________________



From America's Biggest Cover-Up: 50 More Things Everyone Should Know
About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS
by
Neenyah Ostrom, published in 1993


"This book will attempt to
attempt to answer not only that question, but also other, potentially
even more alarming, ones: Is CFS actually part of the AIDS epidemic?
Are CFS and AIDS, in fact, the same illness?


Since the Berlin conference, for anyone interested in observing it,
evidence linking these two refractory epidemics, AIDS and Chronic
Fatigue Syndrome, has continued to accumulate.


Anxiety about the direction of AIDS research had really begun at the
previous international AIDS conference, held in Amsterdam in 1992.


The bombshell of 1992's AIDS conference was the announcement that some
researchers had identified cases of AIDS without evidence of infection
with the 'AIDS virus,' HIV.


These 'non-HIV AIDS cases' had severely depleted T4 (or CD4) cells,
like AIDS patients; they also developed life-threatening opportunistic
infections.


What wasn't known to most observers was that one of the researchers who
had first publicly identified some of the non-HIV AIDS cases, Dr.
Sidhur Gupta of the University of California, Irvine, is a Chronic
Fatigue Syndrome researcher.


And some of the non-HIV AIDS cases, it was soon revealed, were actually CFS patients.


Shortly after the June 1992 AIDS conference in Amsterdam, Chronic
Fatigue Syndrome researcher Dr. Paul Cheney announced that he had 20
CFS patients in his practice who had the same immune system
deficiencies as the non-HIV AIDS cases.


The hallmark of the HIV-negative AIDS cases, as defined by the Centers
for Disease Control and Prevention, is a depletion of the T4 (or CD4)
cells.

. . .


How can AIDS exist in the absence of the virus that causes it? None of
the AIDS researchers gathered in Amsterdam in June 1992 seemed able to
answer that question.

. . .

Dr. Cheney described the immune system damage seen in CFS patients for
the Food and Drug Administration in May 1993. Dr. Cheney told the FDA
that five of his CFS patients had died during the preceding six
months. Two of these patients committed suicide, which is all too
common among CFS patients. But three of Dr. Cheney's patients who
died, like AIDS patients, succumbed to overwhelming infections that
their damaged immune systems couldn't fight off.


But Dr. Cheney's CFS patients, like the ICL patients, appeared not to
be infected with HIV, even though they developed AIDS-like
immunodeficiencies and, in some cases, life-threatening opportunistic
infections.

. . .


Many researchers are attempting to create such a test for CFS. One
line of research that originally appeared to be promising involved
finding a retrovirus, like the virus that supposedly causes AIDS, in
CFS patients. Some researchers had believed that finding such a
retrovirus, and proving it causes CFS, would result in a definitive way
to diagnose this syndrome, as the HIV antibody test has done for AIDS.



But the 'CFS retrovirus' research apparently ran into some roadblocks,
and little progress has been made since the single report describing
the retrovirus was published in early 1991.


. . .

This takes us back to the original questions: Is it possible that a
mistake has been made in formulating the definition of AIDS? Is
Chronic Fatigue Syndrome actually part of the AIDS epidemic?


If this is even a remote possibility, why haven't other books been
written about it? Why isn't every health reporter in the country
writing about it, every investigative reporter investigating?


The answer, I believe, is pretty simple, and it is a problem that has dogged the AIDS epidemic since the beginning: denial."



4 comments:

zombie said...

Wow. Simply wow.

This is the best commentary on HMRV I have read so far. I came down with ME in 1990 (sudden onset, like you) and have been bedridden or housebound for most of the past 19 years. Due to the illness, reading is very difficult for me, but this was worth the effort!

Thank you for tying all the loose ends together so beautifully.

cinnamon radio said...

Thank you for this blog post. Your story is so moving, so filled with the personal costs experienced in the tsunami of ME. I readily identified with much of what you wrote; I fell ill quite suddenly in August of 1985 and went from a life of rock n roll dancing, concerts, fun, and university studies, to being a complete zombie with a strange, bruised feeling the length of my spine, no energy, fever of unknown origin, unable to stand up even long enough to take a shower. I've never regained my previous margin of energy. Another friend with it and I would sometimes comment to one another that we knew people with HIV who were healthier and more functional than we were, but we dared not say that to others. Like you, I was tested early, twice, for HIV, and was negative. I hid my failing health from employers, during the rare times I could work, until I was unable to work anymore at all. Fourteen years ago, I gave up trying to keep a job, and my husband and I live quite marginally on his sole salary as a municipal worker. A life without children, because I was too sick to have them. A life without travel, because travel is one of the most debilitating things. A life blown away when I was 30 yrs old and full of energy and dreams. A life now spent mostly in the walls of a rented duplex, managing small expenditures of energy in order to be able to leave my home for occasional forays into the outside world. A life punctuated by the pain of other peoples' judgments and ignorance. Thank you for what you have written, it is a jewel.

dcreverend said...

Thank you so much for this piece of writing. I've been following these new breakthroughs with rising anger at how much I, along with so many others, have lost to this disease. I tried to talk to my doctors about the similarities I saw between my CFS and HIV in 1992 and was shut down hard. One of the hardest things back then was having the daily experience of a brutal disease that others often said was all in my head. Over time that stigma has lessened somewhat, but still lingers, coming up at unexpected moments and leaving me feeling so judged. After years of active CFS followed by years of fibromyalgia I do not have daily symptoms any more. But I live with the harm wrecked on my body ever day and the fear that whatever lurks in my veins will rise up to take control again. I hope that this new research can give us all some relief and prevent others from going through what we have.

Diana said...

Your onset sounds exactly like mine and I also took a cross-country trip soon after my acute onset in 1990. I felt like I might die of I don't know what several times across country and back.

It gives me chills to hear you describe the dizziness, headache and flu-like illness I rode with in the car that month.

Why are there so many of us who became ill just prior to and after 1990? I don't think it's coincidence.

Thank you for writing this down in such exhausting detail.