By Gail Kansky
Recently, our own Centers for Disease and Prevention (CDC) said they were turning “CFS” over to the NIH for further work. They stated that it was “shameful” that more research had not been done on this illness. They also said that there is no such thing as CFIDS and that Chronic Fatigue and Immune Dysfunction didn’t exist! Indeed, that is exactly what they did in 1988 when a committee was formed to rename the illness and the trivializing name chosen was Chronic Fatigue Syndrome. Anyone who didn’t agree with the name was told to leave the committee and, indeed, a few honest ones did. One who stayed, Dr. Anthony Komaroff, was rewarded by being named a “consultant” to the CDC’s work on “CFS”. Another consultant was Dr. Peter White from the UK who is famous for his PACE trial that is dismissive, erroneously, of all immune dysfunction and recommends cognitive behavioral therapy (CBT) and graded exercise therapy (GET) which can actually make a patient much worse!
When the committee renamed this disease in 1988, Dr. Seymour Grufferman, then chairman of the Department of Clinical Epidemiology and Preventive Medicine at the University of Pittsburgh School of Medicine, urged the patients to call the illness CFIDS since he said they would never “get a fair shake” if they called it the trivializing name of Chronic Fatigue Syndrome. He had already investigated two cluster outbreaks and his laboratory investigations found a significant lower level of natural killer cell activity in both long before the CDC formed the committee to rename the illness. In one part of a summary of his laboratory findings, he wrote, “We found inconsistent depression of NK cell activity, elevation of T4/T8 cell ratios…This led me to coin the name ‘chronic fatigue and immune dysfunction syndrome…” as well as the disease “to be a markedly increased risk of cancer.” Our Memorial List has proven the cancer risk as well as our own government.
There has been a great deal of “research” done since that time, despite the CDC’s refusal to acknowledge any of it despite all being fully replicated which makes it scientific fact. There was a time when multiple sclerosis went through this same type of ridicule when it was called “hysterical paralysis”. The discovery of lesions on the brain made the experts change their mind and rename the illness with the more respectable name of multiple sclerosis. In fact, shortly after the CDC changed the name to trivialize our disease, Dr. Komaroff sent several patients who had lesions on their brain to Harvard University’s MS expert, the late Charles M. Poser, M.D. Dr. Poser sent them back to Dr. Komaroff and told him the lesions found on these “CFS patients” were on different areas of the brain than those found in MS. And, yes, he published on his findings regarding “CFS”. But unlike the discovery of lesions that changed the name of hysterical paralysis to multiple sclerosis, the CFS name remained unchanged.
Among the further research that the CDC refuses to acknowledge is Drs. Knox and Carrigan’s replicated work (funded by the NCF) that proved a part of every patient’s immune system was slowly being decimated and that part was one that protects all people from viruses and bacteria that is called Stat-1. They also pretend ignorance of the fully replicated work done by Dr. Yoshitsugi Hokama, who proved the cause was a manmade toxin among many other discoveries about it. At the time of that research, Dr. Hokama was a consultant to every federal agency including the CDC and he never published without his work first being fully replicated. The NCF funded his work on this illness.
Today, many advocates feel happy that the NIH is now in charge of what they call “CFS”. However, those in charge at the NIH have not acknowledged the progress done by others at the NIH such as the proof that the disease gives patients the risk of developing cancer, replicating what was found so long ago by Dr. Grufferman. In fact, the National CFIDS Foundation seems to be the only group in the world that has offered a copy of that particular medical journal paper announcing that work by the NIH to all of our members (see #44 on the Information Materials Available).
The CDC needed more help after the turn of the century so they could continue to hide the immune dysfunction of CFIDS. In 2002, the NIH gave a huge grant to Dr. Benjamin Natelson who looked over 79 studies of immune dysfunction and found they were all wrong since some patients sometimes had high (pro-inflammatory) cytokines and sometimes they were low (anti-inflammatory). Of course, he disregarded the fact that PWC/ME patients often wax and wane so he ignored that aspect as inconsistent. He also ignored the NK (natural killer cell) dysfunction and that allowed him to conclude that there was no ID and CFIDS does not exist. This submission from one member may help Dr. Natelson understand what his lies have helped do:
And, on a stickers that were made up for the NCF by Marilyn Stewart, a member who died in 2003 of heart and brain cancer brought on by her CFIDS, she quoted George Stewart who said, “Just a drop of truth will quench a bonfire of lies.”
A group of Australian researchers, in 2012, proved the immune dysfunction once again and suggested that the decreasing cytotoxic activity could even be a diagnostic marker! Although their published work should have prompted a retraction by Natelson along with a new age of research, it was merely ignored by all but one.
There is one group that is far ahead of others. The National CFIDS Foundation continues to fund research that will not only prove exactly what is doing this cytokine damage but, hopefully, how to block that damage being done on a constant basis. No, we won’t change our name to CFS or even the government’s way of pacifying the patient community by calling it ME/CFS. The CDC took ME off their diagnostic code when Dr. Hokama was proving so much back in the early years of this century. We know the immune dysfunction is there and we refuse to stop until research finds some a treatment to help us all. After all, we’re all volunteers and know what is most important to the patient community because most of us are a part of that patient community.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606