Letter to Bill Gates

10.11.14

 

Dear Mr. Gates,

 

I'm writing you here because I cannot say what I need to in the 512 characters allowed on your blog.

Perhaps you could write a blog about why an ultrarich man like yourself does not give millions to research the cause(s) and treatment(s) of myalgic encephalomyelitis, a neuroimmune disease that afflicts from 1-8 million Americans and at least 17-100 million persons worldwide. This disease has been acknowledged by the W.H.O. as a neuroimmune disease since 1969. More recently, the American CDC renamed it chronic fatigue SYNDROME and basically threw all patients under the Federal bus. It has been called Low Natural Killer Cell Disease in Japan for decades. Patients suffer as much as those who have malaria or dengue.

Could it be because you didn't know this devastating disease exists? Now you do!

I appreciate what you have done for malaria research and treatment but the Feds spend millions on that already. In fact, the NIH spends more on male pattern baldness research than it does on M.E. research.

M.E. takes our lives without quite killing us, at least not right away. I have been disabled by this disease since 1982. I live in extreme pain, indescribable exhaustion and grinding poverty without hope of a treatment or cure in my lifetime. I function at about 20-25% of normal.

Perhaps you could spare a million or five for:

1 - The Open Medicine Institute, in Mountain View California

http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

Here's a link to their latest efforts: http://forums.phoenixrising.me/index.php?threads/omf-ron-davis-and-james-dna-watson-launch-end-me-cfs-project.33002/

2- OFFER (Organization for Fatigue & Fibromyalgia Education & Research)

http://www.offerutah.org/

3- Simmaron Research

http://simmaronresearch.com/

"The Need: Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) is a debilitating, chronic neuroimmune illness which affects multiple body systems and substantially impairs functioning in patients."

4 - Ian Lipkin's research @ http://cfinitiative.org/lead-researchers/w.-ian-lipkin/

5 - Please do not donate money to the CDC. It would be wasted. The CDC has ignored us or treated us badly for decades, has diverted the money Congress ordered them to use for CFS/ME research and gotten away with just a slap on the wrist for it. Last year the NIH allocated a mere $6 million to research on this disease, despite the fact it is more disabling than MS, heart disease, cancer and many other highly funded diseases. Right now they are spending $1 million to rename the disease -- again!!

Dr. Nancy Klimas, physician and researcher into ME/CFS and HIV/AIDS has said if she had to have one of those diseases, she'd prefer to have AIDS. It can be diagnosed and treated and her AIDS patients are mostly hale and hearty while many of her ME/CFS patients are like AIDS patients near the end of their lives. She has recently received funding to research GWI and has added ME/CFS to that research project.

http://www.nova.edu/nim/

Buy Dr. Wessely a Barrel?

Psychiatrist Simon Wessely, speaking of "CFS" researchers, was recently quoted: “People will rather go over Niagara in a barrel than ever getting involved in CFS again”. -Science, 23 September 2011

Why this psychiatrist is being quoted in Science is a mystery, especially since he claims to have left the field.

Several times.

He admits to having no knowledge of virology, nor any interest in it. “We’re not going to go doing more and more tests to find out what the virus was because, frankly, even if we found it there’s nothing we’re going to do about it.  We’re in the business of rehabilitation.” (http://podcasts.bmj/2010/03/05.chronic-fatigue-syndrome).  In the face of all the evidence that a virus is associated with the disease, he now says, well there may have been a virus involved in the past but it's gone and now patients "erroneous illness beliefs" are keeping them thinking they are still sick. And his policy in UK is not to allow testing for biomedical abnormalities because it "only encourages them to think they're really sick."

Why, then, is Science quoting him in an article on recent viral and retroviral discoveries in this disease?

It's too bad Science didn't ask those 26 scientists and physicians, from 13 countries, who recently formulated the International Consensus Criteria for ME (the World Health Organization name for "CFS") whether they and their colleagues “will rather go over Niagara in a barrel” than continue the biomedical research they have engaged in for decades. The new ICC list over 100 scientific papers and other resources demonstrating the various biomedical abnormalities in "cfs", with dates ranging from as long ago as the 1990s.

Dr. Wessely has dedicated his whole career to nullifying the research of those who would find the cause and treatment of this extremely debilitating illness. That he can, with a straight face, declare "they will rather go over Niagara in a barrel than ever getting involved in CFS again" is a baldfaced misrepresentation of the facts. Why does Science magazine quote an anti-science psychiatrist, supermarket tabloid style, when there are so many better options?

A close examination of his research would indicate he never entered the field in the first place. He started with the disability insurance company position that ME (myalgic encephalomyelitis), later morphed into the derisive and inaccurate term chronic fatigue syndrome, is and always has been a mental illness.

Three decades of biomedical research showing everything from punctate lesions in patients' brains to distinctive immune system abnormalities, mitochondrial damage at the molecular level and neurological damage have not swayed him from his mission.

Getting paid well to deny the facts can do that. The tobacco companies did it for decades, guided by their advertising agency's advice to sow doubt, sow doubt, sow doubt and never stop repeating it. Sowing doubt is what Dr. Wessely is good at, but biomedical research is getting the best of him lately.

So he has resorted to smearing the patients he claims he can “rehabilitate” with talk therapy, exercise “therapy” and psychotropic drugs. Those patients who don't go along with the program in the UK can be forcibly incarcerated in a mental hospital and have psychotropic drugs forced upon them for having the “delusion” that their illness is biomedical.

In fact, one such patient is, at this moment, being held against his will, having forced psychotropic drug “treatment” that is contraindicated in orthostatic intolerance. His “crime”? Treating himself (by drinking more water) for orthostatic intolerance, a commonly recognized symptom of ME/CFS and not backing down when told he was delusional about the existence of the symptom and the illness itself. This patient has a “cfs” diagnosis, including orthostatic intolerance, from both a UK private doctor and one in the US. http://www.mecfsforums.com/index.php/topic,9297.0.html

But UK government doctors don't have to recognize any authority other than their own and Dr. Wessely himself has formulated their policy and signed off on having uncooperative patients forcibly removed from their homes and their caregivers (some of whom have also been threatened with forced hospitalization in a locked mental ward). It is claimed they are "a danger to themselves" for refusing the exercise "therapy", talk "therapy" and psychotropic drugs offered in the only "cfs" treatment centers offered in UK.

Dr. Wessely's smear tactics reached a new low this year when he claimed unsubstantiated death threats from ME patients and what he calls harassment but others would call freedom of speech, freedom of information and access to public records. To challenge his misuse of millions of dollars in research funding is evidence, to Dr. Wessely, that patients are “threatening.” Patients who have systematically had their reality dismissed by Dr. Wessely write him angry, hateful emails. As a psychiatrist, wouldn't his denying the reality of millions of patients with this illness be expected to elicit some hostility? One cannot incarcerate and drug them all so the next move is to convict patients in the court of public opinion.

In the past he and his backers have been satisfied with calling ME patients hypochondriacs, the medically undeserving, disgusting and so delusional as to have nothing but “illness beliefs”. His mind-over-body theory apparently embraces the non-scientific myth that the mind can produce physical evidence of brain damage, immune cell damage and all sorts of measurable physical evidence that is accepted as evidence of disease in most if not all other biomedical illnesses, but not in this one.

Hospital personnel have been forced to allow children and adults with this illness to lie in their own excrement and urine to “prove” they are faking their weakness. Patients have been nearly starved and severely dehydrated in hospitals to “prove” they are faking their inability to feed themselves, to swallow normally and take in enough water. In fact, a previous incarceration by force under Dr. Wessely's policies resulted in the patient's deterioration while in the mental hospital; death a few months after she (Sophia Mizra http://www.sophiaandme.org.uk/ ) was released; an autopsy that showed severe renal dehydration and ganglionitis of the spinal nerves. The coroner judged her death as due to ME. She had been improving prior to having the police break in to her apartment and help having her taken her away.

Yet Dr. Wessely continues to chant the disability insurance company mantra that this illness is “somatisation par excellence” (J Psychosom Res 1994:38:2:89-98); the only two options are “rehabilitation” and return to work, or being abandoned by society as “fakers”? Is it any wonder that ME patients worldwide would like him to make good his threat to leave the field? Is it any wonder American patients would like him to stop influencing the government and the media in America?

To help him on his way, I would like to start a fund to buy Dr. Wessely his barrel with which to go over Niagara Falls. Since his ideas and policies are rooted in the distant past, I don't think a modern barrel of steel or plastic would be fitting. I would like to buy Dr. Wessely a wooden barrel.

I have found a 50-gallon barrel produced in Virginia that costs about $80, plus shipping, which would probably be another $80 or more, but I'll need to check into it. Two barrels can be had for $150, in case Dr. Wessely's wife, Professor of Psychosomatic Medicine, would like to accompany him over the Falls. Of course any broken bones or internal injuries could be rehabilitated with exercise therapy, talk therapy and psychotropic drugs since they would only be erroneous illness beliefs. It would be an opportunity to display the influence of mind over matter that Dr. Wessely espouses.

The water itself shouldn't be of any concern. Dr. Wessely's policy of throwing a teenage patient into a swimming pool to “prove” he was faking turned out OK when his mother jumped in, fully clothed, to bring him back to the surface and give him first aid. We could have Dr. Wessley's mother standing by in case he needed any help with the erroneous inhalation of water.

I also found some smaller barrels with the added feature of having a message printed on them. I was thinking “My mind will protect me from bodily harm” would be a good message for Dr. Wessely's barrel, but these barrels are probably too small to contain him and his ego, too.

What do you think, dear readers of Science and other gossipy magazines like it? Should we help Dr. Wessely avoid “getting involved in 'CFS' ever again”?

Plastic, steel or wood? Fifty gallon or the smaller one with the added message? One barrel or two?

@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@

As an aside, while searching for the appropriate barrel(s) I came across a site that recommends which beer is the appropriate accompaniment for which type of over-the-Falls-barreler and lists some of the more famous trips over Niagara Falls.

For futher amusement, I include two of them.

The one I thought most resembled the age in which Dr.Wessely is stuck:

July 11^th, 1920

Englishman Charles G. Stephens equipped his wooden barrel with an anvil for added balance and stabilization.  Charles tied himself to the anvil for security and after the plunge when Chuck's entourage went to open the barrel and celebrate the feat, they found  that Chuck's right arm was the only item left inside.... we wonder what happened to that glorious 'stache... TWB recommends Rogue's Shakespeare Stout... it clings to mustaches like Chuck's right arm clings to the inside of a barrel.

Interestingly enough, the first person to successfully go over the Falls in a wooden barrel was a woman. (Myra McClure, are you paying attention? Of course, you'd need to let Dr. Wessely go first: Age before beauty...):

October 24th, 1901

Annie Taylor was the first person to conquer the falls in a wooden barrel.  After climbing inside her airtight wooden barrel, a bicycle pump was used to compress the air to 30 p.s.i..  We don't know why that's relevant, but we note it anyway.

She survived the feat with mere bumps and bruises.  Most would think that she'd spend the rest of her life in fame and fortune since daredevils of the early 1900's are like today's reality stars.  However, sadly, Annie died broke and barreless.. much like today's reality stars.  TWB recommends that Annie enjoy any beer in a brown bag... no need for a craft brew... any beer will do.

The Borrommean Property, ME/CFS and HGRV

"Borromean property: the three together are inseparable but no two are linked"

The Borrommean Property is exhibited in three entangled circles, in which, if any one is removed the other two are no longer entangled. A less complex, and less useful, way to imagine this is to think of a 3-legged stool that will fall over if one leg is removed.

To reiterate, it takes all three circles, or properties, to manifest the whole. Until the third property is added, the other two manifest nothing as an entity, although they may separately produce manifestations unique to themselves.

This property should not be confused with Torus Circles, which are another way of entangling three circles, but in which two circles remain entangled even if any one is removed.

How This Property Might Apply to ME/CFS

(and other neuroimmune diseases)

Suppose that one theoretical circle represents the class of retroviruses now being called Human Gamma Retroviruses (HGRVs), for lack of a better description. It is possible that other retroviruses, such as the spuma retrovirus, might fulfill the requisites of this circle.

Suppose that another theoretical circle represents a virus from the Herpes Viruses family, such as EBV, herpes simplex, or a half-dozen others, all of which are common infections that the healthy immune system clears, or at least keeps at bay. This family of viruses is also extremely destructive in the immune-compromised person. It is responsible for neuropathy and rare cancers in humans and animals with compromised immune systems.

Suppose that the third circle represents a much larger menu of possibilities. These might include spirochetes such as those thought to cause Lyme disease. It might include environmental toxins such as solvents, herbicides, insecticides, fungal toxins and other virus families. Stress from surgery, traumatic accidents or extremely stressful life events like war, rape or other physical brutality might be factors.

Some Possible Scenarios

1 – Suppose a person is born with an HGRV, forming circle one.

Then a herpes virus invades, subsides and then hides in the lymphatic system of those susceptible to the disease, for whatever reason, forming circle two.

Then something from the third list, say a spirochete infection or exposure to nerve-damaging herbicides such as those derived from Agent Orange (all nerve agents) occurs to link all three.

The last two insults link with the first to cause brain and CNS damage. Depending on the age of the brain and the strengths and weaknesses of the individual's constitution/genetics, several systems of the body are damaged.

Perhaps the HGRVs stop the body from repairing itself in normal time. The fact that they write themselves into human DNA near the stop-start codons might make it possible to slow down the metabolism and/or the speed of natural repairs. This would result in pain (tissues never get completely repaired) and exhaustion (mitochondrial myopathy, unrepaired tissues and disrupted metabolism). You develop classic ME/CFS.

2 - You are born with HGRV and as a baby you are exposed to viruses from list 2 and jabbed with several vaccinations that provoke an immune response. Your HGRV is stimulated to replicate fast and furiously, damaging your immature immune system and your brain. You are diagnosed with autism spectrum disorder.

3 – You have latent HGRV (from birth or from exposure during an outbreak) and latent EBV (or other herpes viruses). You are exposed to toxic mold, have surgery with an anesthetic that is inappropriate for your body or undergo extreme stress that damages your immune system further. You develop ME/CFS, GWS, MS, ALS or other neuroimmune disease.

4 – Same as number 3 but instead of toxins, surgery or stress as the third circle, you are infected with a spirochete from a tick bite. You develop treatment-resistant Lyme, which is actually neuroimmune disease.

Treatment Implications

Treating any one of these symptom-causing organisms may help the body function better and lighten the viral load. As one ME patient has said, it's like carrying around a backpack of rocks. If you treat one virus successfully, it's like tossing out one of the rocks. But lightening the load is not treating the whole disease complex. It does not remove the effect of that second circle; it simply makes it less.

Since we cannot go back in time and remove the latent viruses or remove the insult from the third circle/list, it follows that we need to focus on the first circle, the one that holds the whole entity together: HGRV.

We cannot remove HGRV from our bodies either, but treatment to stop replication and to stop attachment to cells and, possibly to lower the viral reservoirs, is the natural, logical next step in treating this disease.

Balancing the immune system would then help the patient to become more likely to fend off other insults in the future and keep latent viruses and retroviruses latent.

Borrommean Treatment Approach in Neuroimmune Disease

1 – Test for viruses such as the herpes viruses and the dozens of others that have been found at above normal rates in ME/CFS/Neuroimmune Disease. Treat with antiviral drugs. Develop strategies for patients with extreme sensitivity to drugs or their effectiveness. Starting low and raising dosage slowly might be required.

2 – Test and treat for immune abnormalities. Enhance immune function. Low Dose Naltrexone, Ampligen, Oxymatrine are possibilities.

3 - Test and treat for retroviruses. Ampligen, AZT, tenofovir and raltegravir are available now. Develop a protease inhibitor or retrieve from earlier HIV drug investigations.

Fragile patients might need to start with number 2, enhancing the immune system, before ever trying other drugs. Or they might be successful at starting with low doses and working up.

Stronger patients and those who haven't been sick for decades may be able to do all three legs of this three-legged stool at once. As in HIV/AIDS treatment, a drug “cocktail” may be just what the doctor needs to order.

All of these treatments are available now and there are hundreds of thousands of patients who would gladly become the subjects of treatment trials. The risk of injury or death from such treatments pales in comparison to the living death patients experience now.

My “Borrommean” Prayer

I pray that all the fighting factions, whether fighting from ego, greed, stubbornness and/or ignorance will have an attack of conscience, compassion and accountability and begin to think of all aspects of this disease as treatable now.

Blessings

Blessings on those who already have a well-developed conscience, compassion and a sense of accountability.

You know who you are!

This includes all those physicians who are already quietly doing this for patients who have the resources. Of course, it includes the WPI, which will open its translational medicine clinic for neuroimmune diseases on August 1, 2011, at the U of Nevada, Reno, truly an historical moment!

Borromean DNA

Nadrian Seeman has succeeded in making Borromean molecules. As part of his programme to develop techniques in nanotechnology, he makes DNA molecules with prescribed geometric or topological structures. The construction of known DNA knots and links provides useful objects on which to study the action of enzymes, topoisomerases, which change the topology (link type) of molecules. There are more details at the lab website.

100. Mao, W. Sun, N.C. Seeman, `Construction of Borromean Rings from DNA', Nature 386 (1997) pp137-138.

Are Singh and Bateman Afraid of Proof of Principle Studies? Why?

“Our findings do not support an association between CFS and MLV-related viruses including XMRV and off-label use of antiretrovirals for the treatment of CFS does not seem justified at present.^”

^{-Dr. Ila Singh et al}

^{http://jvi.asm.org/cgi/content/abstract/JVI.00693-11v1}

^{After yet another study purporting to look for HGRVs such as MLVs and XMRV in ME/CFS patients but not following the exacting protocols of the original Lombardi et al study published in Science in 2009, nor those of the Alter/Lo study, the scientific conclusions of this study were predictable. The question still unanswered: When will researchers actually replicate the original study they seek to refute? And how can they, in scientific honesty and in good conscience, keep claiming to refute the study they refuse to actually replicate?}

^{And why add the editorial and unscientific comment attempting to discourage proof of principle studies? Is it about your patent applications, Dr. Singh?  From April 7, 2011 publication of her patent application:}

Title:

COMPOSITIONS AND METHODS FOR TREATING MLV-INFECTION, AND PREVENTING AND TREATING MLV-INITIATED DISEASES

Abstract:

Compositions and methods for inhibiting infection by XMRV or other MLV are disclosed. Also disclosed are methods for treating cancers resulting from infection by XMRV or other MLV, and for preventing such cancers. The anti- XMRV/anti-MLV compounds are predominantly integrase inhibitors, such as globoidnan A, L-000870812, S/GSK1349572, S/GSK1265744, Raltegravir and Elvitegravir, and also reverse transcriptase inhibitors AZT, tenofovir, and tenofovir DF. The compounds are also useful for treating chronic fatigue syndrome or other diseases with neuroimmune symptoms resulting from an infection by XMRV or other MLV. The compositions can also include other therapeutic agents known for treating prostate cancer, breast cancer, lymphomas, and leukemias, such as anti-androgenic agents, radioisotopes, and conventional anti-cancer compounds.

^{What Is “Proof of Principle”?}

^{See my earlier post: http://biomedicalmecfs.blogspot.com/2011/01/xmrv-proof-of-principle-studies.html}

^{In short, proof of principle studies, in the case of ME/CFS, would treat a cohort of patients who have been diagnosed with the illness by competent physicians and, preferably, who have tested positive for XMRV and/or other MLVs/HGRVs, with antiretrviral drug “cocktails”, perhaps in combination with other antiviral drugs to treat some of the co-infections such as those found by Dr. Montoya at Stanford. Another possible combination might include Ampligen.}

^{Dr. Singh herself has already found that at least 3 of the ARVs considered safe enough for HIV/AIDS patients, are effective against XMRV in the lab. Is she afraid that ME/CFS patients will use this information to justify trying to save their own lives by trying those drugs? And if they come to harm, that they would blame her? That doesn't seem logical to me, but I'm trying to understand why she would come out against proof of principle trials and I can't think of any scientific reason. It has been obvious since the mid-1980s, from the brain scans of the Incline Village patients, that the disease is associated with a retrovirus and/or virus(es). Not knowing specifically which RV or virus is no excuse for not treating for them.}

^{She and her collaborators seem to have bought, or wish to promote, the establishment stereotype of ME/CFS patients as a bunch of uninformed fanatics, so desperate that they would harm themselves for no reasonable chance of improvement. Surely she is aware that any patient who tries “off-label” use of antiretroviral drugs to treat the retroviruses associated with ME/CFS are not getting these drugs without the support and assistance of their own physicians. Why accentuate the “risks”, which are acceptable for other patients with retrovirus-associated diseases such as AIDS, without acknowledging the potential benefits? The risks are well known and physicians are doing the tests and surveillance required, so they don't need to be cautioned by researchers. The cautions appended to this study create a murky atmosphere and lead to suspicions of ulterior motives by this group of researchers. At best, it only serves to support the CDC's mantra, there are no tests for ME/CFS, there are no treatments for ME/CFS. Chant three times for maximum inculcation.}

“...off-label use of antiretrovirals for the treatment of CFS does not seem justified at present.^”

^{-Dr. Ila Singh et al}

^Justified?

^{What a curious assessment and what an arrogant, giant leap of logic!}

^{Why should Dr. Singh, the Drs. Light and Bateman make this judgment for others who are equally, or better informed than they are on the subject?}

^{Does anyone actually think that Dr. Snyderman and Dr. Deckoff-Jones should have just accepted their “fate” while waiting for researchers to do the “science” in their own sweet time? See their takes on the subject on her blog: http://treatingxmrv.blogspot.com/}

^{Each of these physicians with personal knowledge of the disease, the research and the potential treatments and side effects came to the conclusion that intervention was and is “justified”. Each has experienced substantial improvement in quality of life. It may even be that Dr. Snyderman has saved his own life, or at least prolonged his survival.}

^{As a cancer researcher, Dr. Singh ought to be more cognizant than she appears to be of the association of all known retroviruses with immune dysfunction and rare cancers, which turn out to be not so rare in ME/CFS patients. This is just one of many similarities that ME/CFS shares with HIV/AIDS. Surely Dr. Singh is not so young or so uninformed that she does not know that early drug interventions were trialed in AIDS before all researchers were convinced that HIV was the cause.}

^{To tell ME/CFS patients like Dr. Snyderman and Deckoff-Jones, and all the rest of us, that we should keep experiencing disease progression, the deterioration in quality of life, the impoverishment, degradation and premature death that comes with having a debilitating illness that has not been dealt with in a scientific, ethical or pragmatic manner for so many decades is incomprehensible to me. It seems like an underhanded swipe at the translational medicine and research of those scientists and physicians at WPI and the University of Nevada, who are collaborating to save lives right now, not in some distant future when “consensus” has arrived.}

<sup>I have to wonder if she would have said the same thing to my mother when she was pressured by her doctor to trial tamoxifen, an unproven cancer drug that patients had to pay for themselves since it was deemed “experimental”. Why is it OK for AIDS patients and cancer patients to try “experimental” or “off-label” drugs when the alternatives can only offer an earlier death or further disease progression?

Why is Singh's co-author, Dr. Bateman, getting involved in the pay-for-treatment study of Ampligen which could be described, in part, as an antiretroviral drug? Who but ME/CFS patients will participate in this study? Hemispherx has said that those who test postive for XMRV have a higher success rate than those who don't.</sup>

^{The conclusions of this study might as well have been “...treatment of CFS does not seem justified at present.”}

^{The only “advancement” of science this study provided: more proof that no one will find the retroviruses WPI found unless and until they actually REPLICATE the study. Just going through the motions without actually REPLICATING the original study does nothing but waste money and, more importantly for me, time.}

^{The ethical, moral and scientific questions I pose to Dr. Singh and her collaborators are these: Why didn't you replicate the WPI study? Why do you engage in this double standard of attitude and treatment of ME/CFS patients vs. those with other diseases?}

State of the Knowledge Workshop ME/CFS Research April 7-8, 2011

State of the Knowledge Workshop
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research
April 7-8, 2011

Building 31, Conference Room 6C10
National Institutes of Health, Bethesda, MD  20892

This NIH workshop will bring together subject experts who will discuss multiple aspects of ME/CFS, including epidemiology, etiology, pathophysiology, diagnosis and treatment.  The workshop panelists will identify gaps in knowledge and opportunities for new biomedical research. 

Workshop Agenda, Online Registration, and Visitor/Hotel Information.  This workshop is open to the public. Please note that attendance is limited, and we encourage registration for those attending in person. For those who are unable to attend, the workshop will be available via NIH VideoCasting (http://videocast.nih.gov/) both during and after the event. 

Individuals with disabilities who need reasonable accommodation should indicate your needs on the registration or contact Infinity Conference Group at (703) 925-9455 ext. 0 or by e-mail at icg@infinityconferences.com. Sign Language Interpreters can be provided if requested.

This workshop is sponsored by the NIH Office of Research on Women’s Health in collaboration with the Trans-NIH ME/CFS Research Working Group.

Preliminary Agenda  DAY 1 – THURSDAY, APRIL 7  8:00 – 8:05 WELCOMING  8:05 – 8:15 OPENING  8:15 – 9:15 PLENARY TALKS  9:15 – 10:45 INFECTIOUS DISEASES  10:45 – 11:00 Morning Break  11:00 – 12:15 SYSTEMS BIOLOGY  12:15 – 1:00 Lunch (On your own)  1:00 – 2:00 IMMUNOLOGY  2:00 – 3:15 NEUROLOGY  3:15 – 3:30 Afternoon Break  3:30 – 5:00 EXERCISE PHYSIOLOGY AND ENERGY METABOLISM  DAY 2 – FRIDAY, APRIL 8  8:00 – 8:15 Reconvene  8:15 – 10:20 DIAGNOSIS AND BIOMARKERS  10:20 – 10:35 Morning Break  10:35 – 12:30 TREATMENT  12:30 – 1:30 Lunch (On your own)  1:30 – 2:30 COMMUNICATION OUTREACH  2:30 – 2:45 Afternoon Break  2:45 – 4:45 SUMMARY AND CONCLUSIONS  4:45 – 5:00 CLOSING

Sponsored by The Office of Research on Women's Health, National Institutes of Health (NIH) In collaboration with The Trans-NIH ME/CFS Research Working Group

If you have any questions, call (703) 925-9455 ext. 0 or e-mail icg@infinityconferences.com **************************************************************************** Online registration needs to be done by March 30. https://www.infinityconferences.com/InfiniBase/Registration/Reg.aspx?ptguid=bf17bb1b-7df8-4ba5-b7a0-ba91edfbd56c Let us hope that the session called EXERCISE PHYSIOLOGY AND ENERGY METABOLISM will have real biomedical information, not the psychobabble from the UnumProvident controlled psychopuppets from UK and the CDC. More info: http://orwh.od.nih.gov/CSF%202011/newsEvents.htm

Reeves Strikes Again - "It's Your Uterus, Dearie!"

Just when you thought the nightmare on Clifton Rd (location of the CDC) was over, Bill Reeves rises from the crypt to once again assert "It's your uterus, dearie."

A 19th Century medical myth, "hysteria" or the case of the wandering womb, has once against metamorphosed into what passes for research in the pretzel-logic and sham research tradition into "CFS" perpetuated by Bill Reeves and Co.

Gynecological History in Chronic Fatigue Syndrome:
A Population-Based Case-Control StudyRoumiana S. Boneva, M.D., Ph.D.,1 Elizabeth M. Maloney, M.S., Dr.P.H.,1 Jin-Mann Lin, Ph.D.,1James F. Jones, M.D.,1 Friedrich Wieser, M.D.,2 Urs M. Nater, Ph.D.,1,3Christine M. Heim, Ph.D.,4 and William C. Reeves, M.D., M.Sc


In the January 2011 issue of "Women's Health" (what else? we all know CFS is a woman's disease, right? Let's just ignore the fact that Dr. David Bell's practice finds 50 % of his ME/CFS patients are male and many of them are or were children when they first became ill.) Reeves and the usual suspects like Jones, Heim and Nater once again get it backwards.

They note, or just try to infer, that women with a lot of gynecological problems are more likely to have "CFS". Therefore, those gynecological "abnormalities" must be causing the "CFS", right? It couldn't be that what causes "CFS", like retroviral and viral infections and maybe bacterial co-morbidities could be causing those gynecological "abnormalities", could it?

Reaching back into the good old days when not many had yet noticed that the CDC's Viral and Chronic Infectious Diseases Branch had nothing biomedical to say about ME/CFS, Reeves cites papers from as far back as 1986 to support his latest paper's thesis, but includes not a mention of the recent biomedical research that is so pertinent.

 Reminds me of the map makers of long ago who believed that if you sailed far enough west you would fall off the edge of the Earth.

  He can't resist citing himself and his co-conspirators a few times as well. He's still hawking his psychological pseudo-theories in the footnotes:


44. Heim C, Wagner D, Maloney E, et al. Early adverse experience
and risk for chronic fatigue syndrome: Results from
a population-based study. Arch Gen Psychiatry 2006;63:
1258–1266.
45. Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves
WC. Childhood trauma and risk for chronic fatigue syndrome:
Association with neuroendocrine dysfunction. Arch
Gen Psychiatry 2009;66:72–80.

I'm sure it's comforting to the parents of children with ME/CFS to know that the CDC has determined they must have sexually abused their children and/or traumatized them in some way, to cause them to get the disease. Let's just ignore the family studies that show that children with ME/CFS often have parents, especially mothers, who either have ME/CFS or MS and the high rate of autism occurring in those same families. Let's just ignore all the viral, retroviral and infectious disease research that has accumulated over the last 25 years. Let's pretend that the 2009 Science paper never happened. Prescient as always, Bill predicted the CDC wouldn't find XMRV, and by golly, they didn't.

I'm still waiting for the CDC and/or Reeves, maybe with the sponsorship of CAA, to do a study of "CFS" in the boys sexually abused by Catholic priests over the decades. Seems like the perfect cohort for testing the sexual abuse hypothesis, doesn't it? Maybe Suzanne Vernon could help design the study.

There is nothing scientific about this whole paper, although its writers go to great length to give the impression that there is. They wedge the idea of mental illness into it by noting a third group of mainly depressives with "insufficient fatigue", into the narrative and in the illustrative figures, but then go on to say that this group was not considered in the "analysis". Then why mention it at all? I guess they just couldn't warp the science enough to find a way to include this group but tried to infer "guilt by association" somehow.

"Participants who met some but not all three criteria
for CFS constituted the ISF (insufficient fatigue), a separate group that is not
included in the current analysis."

Sort of like saying "In our study of pumpkins and gourds, we wanted to include some carrots, since they are orange, ("some, but not all the criteria"), but they didn't meet the criteria of being produced by a vine. We're including the attributes of the carrots just in case. But we didn't include those "participants" in our "analysis".

Their "cohort" was the notoriously unrepresentative Wichita cohort, obtained by the Publisher's Clearing House method: random digit dialing to households with telephone numbers in the current phone book database. They couldn't just contact the physicians who have patients with the disease, could they? No, those doctors are "contaminated", according to the CDC. This "contamination" is of the mental type, of course, in that they follow Sir William Osler's recommendation that they listen to the patients in order to diagnose. He liked to say, "He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all." His best-known saying was "Listen to your patient, he is telling you the diagnosis," which emphasises the importance of taking a good history.

Instead they take their standards from the disability insurance industry which has a policy of declaring that doctors who actually see the patients can't possibly know more about them than their own on-staff doctors who only go through the files, never seeing the patient, but finding that the patient couldn't possibly have the disease since there are no "objective" findings.

Then they try to turn the weakness in their cohort selection into a positive, using the CDC's trademark pretzel-logic:

"A major strength of the study is its design as a population-based case-control
study, avoiding referral biases inherent to studies of CFS from
referral clinics and the use of convenience controls."

Uhhhhh..., right! Random digit dialing must be better than "referral biases" (what?) from "referral clinics". In other words, we're not going to let any patients with a bona fide diagnosis from a clinician who knows how to diagnose ME/CFS into any of OUR studies! Likewise, those damned "convenience controls". Our random digit dialing is inherently better!

There's one thing the CDC has been very effective at: keeping the disease "mysterious" and making sure that none of the tests, biological markers or treatments ever get tried and tested. Keeping them forever "experimental" means that no insurance, including Medicare, has to do the testing that would prove the biomedical abnormalities present. With no "objective" evidence of disease, the disability and health insurance companies usually don't have to pay up, neither for disability nor for treatment. Those who have the money to outlast them can win. It took Samuel Salomaa 8 years in court to win his disability claim against Life Insurance Company of America, despite having the support of CFS specialists, including Dr. Natelson. It took Clinton Merrick 13 years in the courts to win his CFS disability claim and punitive damages against the disability insurance companies that tried to rip him off. The infamous UnumProvident was a part of that case. Those who don't have the money to defend themselves are simply hung out to dry.

In addition to their bogus cohort, this study uses their bogus criteria/definition of the "syndrome". They say they used the "International Definition" and the "empirical definition". Both were invented to suit their purposes, with the input of the likes of Michael Sharpe from the psycho-quacks of UK. "International" actually means that the US and the UK got together and agreed on the best way to define the disease out of existence: by diluting it to include the depressed and the simply "fatigued".

Then they add a lot of boilerplate statistical mumbo jumbo, much ado signifying nothing. They make a big deal out of the "CFS cohort" having "significantly more" pregnancies that the controls. Actually the "CFS" women had 2.8 pregnancies each and the controls had 2. Why is having nearly 3 pregnancies "significantly more" than two? They go on to state that they didn't ask (it was all done with questionnaires) how many births, miscarriages, abortions or stillbirths any of these women had, essentially admitting that the number of pregnancies couldn't be interpreted to mean anything at all. Yet it was "significant".

None of their other "findings" were significant either, but they ended up concluding:

"In conclusion, the higher prevalence of gynecological conditions
and surgeries in women with CFS highlights the importance
of evaluating gynecological health in these patients." (Uhhhhh....wouldn't evaluating gynecological health be important for all women?)

Translation: "Give us some more money and we'll do some more bogus research" without ever seeing any patients who have the disease and without taking into consideration the Emory study that found XMRV in the reproductive organs of the female and male monkeys. It's not like they never heard of Emory. That's where they've done a lot of their "mind-body" "research", using money from the Chronic Viral and Infectious Disease Branch to not investigate the chronic viral and infectious aspects of the disease.

A little CYA and pseudo-humility amongst the hubris:

"Our findings are derived from a population-based study in
which most patients with CFS reported gradual onset of
symptoms and may not apply to women with sudden onset or
postinfectious fatigue. Participants in this study were somewhat
older than in other studies.8 A different participation
rate between cases and controls may also have introduced
selection bias."

 
Translation: After all that random dialing, they could only find 36 women with "CFS" in Wichita!

And where at CDC are the studies on "postinfectious fatigue"? Or "sudden onset", for that matter? No, no, no. No viral or infectious diseases here, folks. Just pre- and post-menopausal women who were sexually abused as children and are stressed out about it. That and their raging hormones, or hormones that don't rage enough.

Where are the studies of men who have this disease? Children? Maybe not enough men and children were home when the random digit dialing took place, hmmm?

The frosting on this rancid cake:
"We acknowledge Elizabeth Unger, M.D., and Daisy Lee of
the CDC and Suzanne Vernon, Ph.D., formerly of the CDC,
for their contributions to the study protocol."

About a year ago, in a public forum, Cort Johnson told me Suzanne Vernon, currently the "scientific advisor" for CAA, and Bill Reeves "hate each other" in one of Cort's many defenses and apologies for behavior disloyal and counter to the interests of ME/CFS patients by the CAA. I don't remember if that was before or after his editorial saying the CDC wasn't up to anything nefarious - they honestly believe they're right. Right! I didn't believe it then and I don't believe it now. I used to think Vernon was a "Trojan horse" in the CAA but now I realize she and Kim McCleary are in tandem harness, pulling in the same direction, in perfect harmony.

Now aren't all you guys with this disease happy to know your gynecological history is probably what caused your disease? Aren't we all glad that Bill Reeves, no longer at CDC, is still producing such wonderful research with the limited funds available?

Please, Bill, sail west and fall off the edge of the Earth. Take Suzanne, Kim and Elizabeth with you.

"... cheaper than chimpanzees." Experimenting on mental patients & prisoners.

"In widely covered congressional hearings in 1973, pharmaceutical industry officials acknowledged they were using prisoners for testing because they were cheaper than chimpanzees." - AP story on Yahoo

"ATLANTA – Shocking as it may seem, U.S. government doctors once thought it was fine to experiment on disabled people and prison inmates. Such experiments included giving hepatitis to mental patients in Connecticut, squirting a pandemic flu virus up the noses of prisoners in Maryland, and injecting cancer cells into chronically ill people at a New York hospital." - Michael Stobbe

If you think the psychiatric industry's push to have ME/CFS categorized as "medically unexplained" and a "psychosomatic" illness has no meaning for you who have this neuroimmune disease or care about someone who has it, think again. Institutionalized mental patients are, for all intents and purposes, prisoners. They become prisoners of mental institutions without the due process of law that those who are accused of crimes are afforded under the law.

In some US states, psychologists and psychiatrists are advocating a change in laws that now require two doctors to sign legal papers authorizing the commitment "for observation" of those who might be "a danger to themselves or others". They want to be able to commit people on the signature of one doctor.

Imagine that you or your loved one goes to a physician who diagnoses the ME/CFS patient as depressed or as somatizing. Imagine the prescription for exercise, talk therapy, drugs. If the patient, knowing her own body and her own experience, refuses this "treatment", she could be committed to a mental institution to enforce "compliance", "for her own good". The death of Sophia Mirza is one of the results of this policy already in force in UK. The men in white coats came to her door, with her mother present and objecting, forced their way in and took her away against her will. It could happen in the US.

Mental hospitals do not have the capacity or the knowledge needed to treat a neuroimmune disease and the multisystem dysfunctions that result from it. To the person with a hammer, everything looks like a nail. ME/CFS patients committed to a mental institution can expect to be pounded into the perceived holes dreamed up for them by psychiatrists, psychologists and physicians who collude with them.

Once committed, patients no longer have the right to "refuse" treatment or even give consent to treatment. They can be, and are, injected with psychotropic drugs against their wishes. And if the psychiatric industry so declares it, the "treatment" for ME/CFS can be GET, CBT and antidepressant and antianxiety drugs. These drugs have generally proven unhelpful for those with ME/CFS. They can have side effects that are permanent. As for exercise as a "treatment", ME/CFS patients are already doing all they can physically, so urging them to increase physical activity is unnecessary and can be damaging.

And what if "resistant" mental illness "requires" ECT - electro-convulsive "therapy"? You thought that went out in the era of "One Flew Over the Cuckoo's Nest"? No, it comes back around in fashion every so often. It's the treatment of last resort in the minds of some psychiatrists, rather like sending the patients to a psychiatrist was in the first place, for the physician who couldn't correctly diagnose ME/CFS in the first place. For the ME/CFS patient already experiencing seizures, being convulsed by electricity as a "treatment" for a CNS that is already fragile could be the last shock it could not withstand.

Research by scientists and clinicians who actually treat biomedical ME/CFS, not the watered-down version invented by the CDC and the NHS in UK, but the Canadian Consensus definition of CFS, has shown that exercise and talk therapy are no more "treatments" for this neuroimmune disease than they would be for other diseases, such as HIV/AIDS, polio, MS, malaria or hepatitis C.

Of course, any sufferer of debilitating disease might benefit from counseling on how to cope, but coping strategies are not treatments for the disease itself.  Any researcher or clinician who acquiesces to this emotional and intellectual manipulation is colluding with the school of propaganda that seeks to inculcate the disinformation that "illness beliefs", present stress from previous childhood abuse, or any other thoughts cause or sustain this disease.

If you don't apply this standard to other neuroimmune diseases, you can't apply it to ME/CFS. Period.

The race is on. Will biomedical researchers be able to prove, create and market a reliable test for the biomarkers already found for ME/CFS before the psychiatric cabal can change the involuntary commitment law and the DSM to suit themselves?

This is why it is such a big deal when the likes of Kim McCleary, Suzanne Vernon and CJ do and say things that chip away at the real biomedical research and those researchers. Delaying and sabotaging biomedical research give the psychiatric lobby, supported by the disability insurance lobby, time to get their plans into place.

For a glimpse into how disability insurers such as Unum operate, read the case of a man disabled with CFS and how many years of harassment, appeals and fighting it took for him to win. Read the judge's list of 13 illegal tactics several insurers and reinsurers regularly use to avoid paying legitimate disability claims. Mr. Merrick was a millionaire and had the means to fight and to survive the fight, unlike the vast majority of those who have already been impoverished by the disease before they try to get disability benefits.

It would shortcut the process a great deal to just have those with ME/CFS labeled as mentally ill, to prescribe GET, CBT and cheap drugs and to then put them away if they don't or can't comply.

Sophia Mirza.....it could happen here. And Kim McCleary regrets that CBT and GET are "not available treatments" in the US, no thanks to her and her cronies.