NCF Banner



By Donna Sumner

From Winter 2014-2015 Forum

There are many advocates who complain about the amount of funding that is given to applicants for “myalgic encephalomyelitis/chronic fatigue syndrome” when we realize that they really mean CFIDS/ME. To calm them down, they are giving out more funding but one can be sure that no amount of funding will go toward actually proving the cause of this illness and directing a therapy toward the cause since, without targeting the actual cause, any therapy will merely address some symptoms to a slight degree. The ones who get the funding know that they must only address the periphery as has been proven since the very first grant from the NIH was given for a syndrome that our government called “chronic fatigue syndrome”. It isn’t the actual amount of funding but the type of funding that will bring us no closer to the cause along with a therapy based upon that cause.

One example of this was a grant by the NIH when they funded nearly $2 million to Mary A. Fletcher from Nova Southeastern University in Florida. Dr. Fletcher and her research team, which includes Nancy Klimas, will look at “GENDER DIFFERENCES IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME”, as they have already done this work in Gulf War Illness that has brought no real relief to any of those who are living with that illness. She said, “We are also funded through the NIH to assess differences in genomic, cellular and chemical response using our dynamic model among female patients with ME/CFS and healthy controls. The clear missing link is the comparison of men with ME/CFS to outline further differences in response between genders and develop effective tailored treatments for both men and women.

“We will also extend our modeling work of immune regulatory pathways and pathways that regulate latent viral expression in a way that will enable us to compare gender differences in terms illness mechanisms and explore gender-specific therapeutic targets. We aim to understand the mediators of persistence and relapse in men with ME/ CFS, as we have in women.”

Wow, sounds good, huh? Not really. They’re merely finding various things that affect both male and female PWC/MEs or things that affect only one of the sexes. You don’t have to be a scientist to understand, however, that females with CFIDS/ME are more prone to breast cancer and the male PWC/ MEs are, instead, more prone to prostate cancer. In fact, no female patient has ever had a problem with their prostate nor have they ever had a prostate. That’s not that remarkable! They’ll probably find similar problems when they look at “the mediators of persistence and relapse in men with ME/CFS, as we have in women.” Didn’t Dr. Ismael Mena, of the Harbor-UCLA Center in Los Angeles. find what mediated a relapse when he proved, in his own words, “All adult patients with chronic fatigue have abnormal diminution of blood flow to different areas of the brain — mostly in the frontal lobes”? Dr. Mena used neuroSPECT scans and found that exercise caused that hypoperfusion. Yes, he tested both male and female and, decades ago, this diplomat of the American Board of Nuclear Medicine won awards as a distinguished scientist for work he did decades ago!

So why did these researchers begin a trial in September of 2014 and state that “The proposed study will correct a gender imbalance in ME/CFS research. It may lead to phase 1 trials of targeted therapies designed to restore a normal balance of autonomic, immune and endocrine systems and thus, health in men and women” when that had already been proven so many years ago and never led to any “therapies”? Don’t they know that ALL AUTOIMMMUNE DISEASES are found in larger numbers of females than in males? I remember traveling to Massachusetts in the early 1990’s to hear Dr. Anthony Komaroff explain this to anauditorium filled with PWC/MEs!

Does the NIH only give money out to “CFS” researchers that will really bring them nowhere near a cause or a real therapy? No, it happens in many illnesses where the NIH doesn’t want to find out very much. Another recent example of this ongoing travesty can be found in yet another NIH grant given to Dr. Nancy Grace Klimas who was funded to look at “WOMEN V MEN WITH GWI: DIFFERENCES IN COMPUTATIONAL MODELS AND THERAPEUTIC TARGETS”! Yes, Dr. Klimas, who happily took money to, for the umpteenth time, look at “post-exertional malaise”, also wastes money to study a similar “syndrome” that her research team has already looked at before. In fact, Dr. Klimas was the very first researcher to get an NIH grant to study “CFS” in the 1990’s. When another well-known specialist heard of her first CFS grant, he said, “She sold out!” How? Well, all good grant applications regarding “CFS” had been turned down by the NIH and, sure enough, Nancy Grace’s applications were no different. She had no trouble getting grants with the exact same language used except for the particular illness named which, at that time, was AIDS but the same grants that named “CFS” were turned down. Then she got one through for “CFS” in 1999 and it was on cognitive behavioral therapy (CBT)! Yes, she did sell out.

What these new advocates must learn is the history of this illness and how no amount of money to study “CFS” that is given by our NIH is going to get any PWC/ME any closer to better health. They merely redo all that has already been done with their funding just as the CAA did in the past with and are continuing to do to this very day on “post exertional malaise”. That was already proven by Ismael Mena using patients sent to him by Dr. Jay A. Goldsteinso many years ago.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606