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Is ME infectious?

Postby Janancee on Wed Aug 14, 2013 10:58 am

Question for Dr Alastair Miller
Fourteen years ago I became ill. Within 12 months four close friend also became ill with similar symptoms. We were all individually referred to NHS consultant neurologists. We each now have/had ( one friend sadly died last year after being bed bound for over 7 years) a DIFFERENT diagnosis. I was finally given my diagnosis this year – CFS. It seems clear to me that there was some infectious agent involved. As an infectious diseases expert with a knowledge of M.E. have you come across any clustering in this illness? Also what are your thoughts about the infectious nature of M.E.?
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Re: Is ME infectious?

Postby thinker1 on Wed Aug 14, 2013 1:15 pm

Please see my question on transmission.
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Re: Is ME infectious?

Postby Bluebottle on Wed Aug 14, 2013 3:18 pm

"WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E. ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and
epidemic forms. "

The first recorded outbreaks of M.E. were in epidemic form such as at the Royal Free Hospital in 1955, and some of those patients remain ill. However, the neurological illness M.E. has now been so confused with chronic fatigue (a symptom of many illnesses )that I think the medical profession have lost sight of the fact that in its severe form M.E. is known to be infectious.
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Re: Is ME infectious?

Postby Dr Alastair Miller on Wed Aug 14, 2013 5:19 pm

CFS/ME remains a "medically unexplained syndrome" in that we do not have a good explanation for the mechansim by which it produces its symptoms and indeed, we do not even know if it is the same mechanism in every patient. There seems little doubt that much CFS/ME is triggered by an infection (usually viral) and precipitating illnesses vary from influenza, Epstein-Barr virus (glandular fever) to non specific upper respiratory viral illness. The symptoms appear to be due to the body's reaction to the virus rather than a direct attack by the virus itself. There is therefore no evidence or suggestion that you can "catch CFS/ME" from someone else who has it. By the time that the illness has developed the virus has probably long gone (although to confuse the situation further, some viruses such as EBV continue to infect people for life.

There have certainly been well described instances of outbreaks of infection (such as the flu outbreak at Lake Tahoe or the Cocksackie virus outbreak in the West of Scotland) where a large number of individuals caught an infection and then a significant proportion went on to develop ME/CFS
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Re: Is ME infectious?

Postby kittycat2000 on Fri Aug 16, 2013 1:22 am

With regard to the well documented case of the Royal Free Hospital outbreak, I developed M.E while working in an NHS hospital in 1996. At this time several members of staff throughout the trust, from admin to nursing were off sick with an undiagnosed condition. The husband of a colleague who worked in a different hospital himself was diagnosed with M,E at the same time as myself but fortunately he was able to return to work after around 18 months. I have not been so lucky, I have been unable to work since this time and recently my condition has worsened. I firmly believe that while M.E is not contagious in itself, that there is some as yet unidentified virus which some of our immune systems are unable to fight.
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Re: Is ME infectious?

Postby Erik Johnson on Fri Aug 16, 2013 3:14 pm

I'm a survivor of the 1985 Lake Tahoe epidemic, a graduate of Truckee High School, and a Holmes et al "CFS definition patient-study group" participant as a prototype for the new syndrome of "CFS"

We have had a few more minor outbreaks since then, but nothing like the huge "Mystery Illness" incident that sickened thousands of people.

This strange illness is full of bizarre contradictions.
At times spreading like wildfire through groups of closely associated people, yet with people from these very groups seemingly unable to transmit it to anyone else.

I saw a pattern immediately. A strange "exception to the rules" in which the flu-like illness turned from noninfectious to wildly contagious.

The contagion occurred when people in the early "shedding phase" of viral illness were all in the presence of moldy buildings, particularly ones with Stachybotrys Chartarum.
Only then, was the disease easily passed from one to another.

The Truckee "teachers lounge" incident that caused Dr Peterson to call the CDC, starting the path to the new syndrome, is a very well described example of this process.

I contacted the teachers at Elk Grove, and they found the very same "toxic mold" that we in Truckee did.

The clues are right there. Simply ask yourself, "If this were a purely viral illness, then why did the one teacher who made the effort to get out of that lounge manage to avoid becoming ill?"

-Erik Johnson

http://www.ncbi.nlm.nih.gov/pubmed/8148452
Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
Chester AC, Levine PH.
Georgetown University Medical Center, Washington, D.C.
Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
PMID: 8148452 [PubMed - indexed for MEDLINE]
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Re: Is ME infectious?

Postby Erik Johnson on Sat Aug 17, 2013 3:46 pm

I was contacted yesterday by another Incline Village survivor who saw my post and responded.

He had been mystified by the circumstances of his onset for all these years, and confirmed
that his circumstances precisely match my observation.

2014 will mark thirty years that the entire medical profession has ignored and completely refused
to look at the circumstances under which contagion "broke the rules".

They use the evidence of all the times it wasn't transmissible as "proof" that it is not, and willfully neglect examining the times when it defied their expectations.

-Erik Johnson
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Re: Is ME infectious?

Postby Erik Johnson on Sat Aug 17, 2013 4:02 pm

http://www.youtube.com/watch?v=AW0x9_Q8 ... re=related

"This seemed to be evolving, before our eyes, from a flu-like illness into something else"
-Dr Paul Cheney

"... and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team."
-Dr Nancy Snyderman

"That's when we wondered, Hey, maybe we better call somebody. This is really unusual."
-Dr Paul Cheney
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