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The Doctors and Mr. Hyde: Amy Brown’s M.E Enterovirus Story

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Reprinted with the kind pernission of Cort Johnson and Health Rising.

By Cort Johnson

Byron Hyde M.D. is a Canadian physician who has focused his practice on chronic fatigue syndrome (ME/CFS) patients for the past 30 years. In 1988, he founded the Nightingale Research Foundation to “explore, understand and treat the patients disabled with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (M.E. and CFS), fibromyalgia-type illnesses and post-immunization injuries”.

In 1992 he edited and published the 752-page The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome which in some ways has yet to get matched. He has an extensive database of over 3,000 ME/CFS/FM patients dating back over 20 years.

Missed Diagnoses and M.E.
 
His controversial hypothesis is that ME/CFS is made up of two classes of illness: a condition called myalgic encephalomyelitis (M.E.) caused by an enteroviral infection, and another class of illness – known as chronic fatigue syndrome – which represents a false diagnosis. Hyde believes that M.E. patients are being mostly felled by enteroviruses belonging to a newly discovered branch of the enteroviral tree. (Other branches include the paralytic polio causing enteroviruses.)
 
Hyde, who is still practicing, is known for his extensive testing regimens. He asserts that people with true ME have a recognizable onset and distinctive brain signature that PET or SPECT scans will pick up. All the others almost invariably have another illness which testing, if enough of it is done, will pick up. (Some ME/CFS physicians will probably balk at that second conclusion…)
 
Hyde believes that a “large number of these reputed CFS patients have a treatable disease and with proper examination could be back to school and work.” He’s essentially agreeing that ME/CFS is a wastebasket diagnosis. He differs from others who’ve used that term in that he believes that people with ME/CFS are really do have an illness – just not ME/CFS.
 
It’s a stark thesis, one which one commenter pointed out, would, if taken to its logical conclusion, end research into this “disease” (!). (It would also boost research into enteroviruses and “M.E.”). It also appears to leave aside the possibility that the comorbid diseases associated with ME/CFS might have a common core.
 
Hyde’s thesis presents an opportunity and a problem. If he’s right then a significant subset of “ME/CFS” (how large is unclear) have a disease that may be able to be treated, if they can only get diagnosed.
 
Of course, some people with chronic fatigue syndrome (ME/CFS) and/or fibromyalgia see many doctors and go through years of expensive testing to no avail. Others, perhaps in the majority, get more limited testing done. The difficult question, given the expense of getting tested in the U.S. and elsewhere, is when is enough testing enough?

Hyde said it’s impossible to say how many people diagnosed with chronic fatigue syndrome actually have M.E. or vice versa. He does provide some ways to determine what group he thinks you’re in, though.  Since enteroviral infections generally occur from June to November with a blip at Christmas, and often (but not always) occur in epidemic form (i.e. other people are getting sick around you), if your illness didn’t start then, then you probably don’t have M.E.
 

A SPECT or PET scan done according to his protocol will then confirm or deny ME. If you don’t have ME you should, he believes, get more extensive testing done. He described his findings from some recent “chronic fatigue syndrome” patients in an email.
I just got off the line with a US patient I was seeing on SKYPE/FACE TIME: he has been diagnosed with CFS, but in reality he has Hughes Syndrome (antiphospholipid syndrome). This is a very nasty genetic illness and his grandmother had a diagnosis of lupus. Dr. Hughes from St Thomas Hospital in London only first discovered the disease after 1985. So it is understandable it was missed for his grandmother who may have had Hughes Syndrome and not lupus.
 
Yesterday I saw a lovely teenage girl who looked like she was going to melt in front of me and was totally incapable of standing. She had been ill for 5 years and it was like her muscles were made of ice melting under a hot sun. She had not only severe POTs, missed by over 10 physicians, she also had one of the most classic cases of Ehlers Danlos with her carrying angle bent backwards by 220 degrees, (also missed), and I have only started to examine her.  
 
On examination she also had a significant heart defect that had been totally missed. She’s been Ill for 5 years and no one had done a cardiac workup.
 
Two weeks ago another CFS patient was here for the first time and she had a missed heart disease and she has never been examined.
 

When I asked if any missed diagnoses in particular stood out, Dr. Hyde said

Cort, there are so many it is ridiculous. I would have to go through a few hundred or even thousands of patients to adequately answer that question. He suggested though, that one area that people with gradual onset might want to focus on is the heart. 
 
One thing is certain, any patient with a diagnosis of acute onset or gradual onset CFS should have a complete cardiac assessment including, since most of these things can be either corrected or cured: example: (1)  ECHO, (2) 48 HR Holter when they are told to run up steps, stand at attention for 10 minute without moving, go to a shopping centre (all these things will have an effect on the Holter(3) Stress ECG on a tract or bike, (4) Carotid Doppler. Up to 10% will have a significant missed cardiac illness. 
 
Another recently emerging possibility is hepatitis B immunization:
 
I am also a very pro immunization physician but recombinant hepatitis B immunization is another matter. I have had 3 deaths and over 100 cases who have chronic, chronic illness following within one week of the second or third immunization with RHB. If you don’t know this, these people are called CFS.

The basic problem, Dr. Hyde believes, is that most doctors are not curious enough.  The biggest problem with a chronic fatigue syndrome diagnosis is that for most doctors it ends the search. Either the doctor believes the illness is mental and sends them to a psychiatrist/psychologist, or doesn’t know what to do with it and discharges the patient, leaving them on their own.

What is more the problem is how physicians examine patients.  The lack of physical examination and history taking has become pervasive. They tend to have a set group of blood tests and if they are normal then you treat the patient with an anti-psychotic of which there must be many, many dozens.

I think all physicians, when they do medical school, should be obliged to read the 1990’s book, On Fatigue by the incredible Italian author from the University of Turino, Dr. Angelo Mosso, one of the most beautiful books ever written on the understanding of the cause of fatigue.
 
Mosso devised a technique to open up the skull and insert water to study the shrinkage of the brain when abnormal fatigue set in. You can see this today if you do a circulating blood volume on real ME patients. They all have significantly decreased blood perfusion to the brain, some even as high as 55% decrease on SPECT circulation study.
 
Looking For Original Incline Village/Lake Tahoe ME/CFS Patients
 
Despite the fact that Dr. Hyde has been studying patients from the original M.E. outbreaks for years (he says 80% had enteroviral infections) he’s never been able to talk to any of the original Incline Village / Lake Tahoe patients. Please contact him at the Nightingale Foundation if you’re interested. There would be no charge for the consultation.

Hyde recently published a long and for many patients possibly quite familiar story of physician inattention which (a) outlines his concerns regarding the medical profession and (b) provides  a dramatic backdrop for his assertion that undiagnosed enteroviral infections are rampant in M.E. Along the way, Dr. Hyde suggests that if the polio vaccine engineered decades ago had covered a few more enteroviral strains “M.E.” would not exist, and worries that new enteroviral outbreaks in Asia may soon start producing more M.E. cases in the West would not exist either.

Check out “Amy’s” story below.

You can read Amy’s story here.



About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

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