Discussion in 'General ME/CFS News' started by Dolphin, Feb 26, 2016.
I get an error message with this link.
Hopefully fixed now.
Persons in the county of Dubbo, Australia, who became ill with Epstein-Barr virus (EBV), Ross River virus (RRV) or Q fever (QF) were prospectively studied to see how many of these persons would develop ME/CFS, as defined by the CDC criteria5. Each of the three agents led to ME/CFS in 6% of those infected when evaluated one year after infection. This is particularly interesting in that the three agents were different: EBV is a DNA virus, RRV is an RNA virus, and QF is caused by a rickettsial organism. "
From that info in the iacfs.org link.. it does play it down a bit as in fact it was 11% with fit with CFS diagnoses AFTER those things at the 6mth point which we all know that unexplained CFS symptoms is when CFS is diagnosed. (so why didn't they report it was 11% got CFS though some did recover. I hate how that 6% is playing down what actually did occur. near double that figure could of been off of work for 6mths)
see the following
The region surrounding the township of Dubbo in rural Australia, encompassing a 200 km geographical radius and 104,400 residents.
253 patients enrolled and followed at regular intervals over 12 months by self report, structured interview, and clinical assessment.
Detailed medical, psychiatric, and laboratory evaluations at six months to apply diagnostic criteria for chronic fatigue syndrome. Premorbid and intercurrent illness characteristics recorded to define risk factors for chronic fatigue syndrome. Self reported illness phenotypes compared between infective groups.
Prolonged illness characterised by disabling fatigue, musculoskeletal pain, neurocognitive difficulties, and mood disturbance was evident in 29 (12%) of 253 participants at six months, of whom 28 (11%) met the diagnostic criteria for chronic fatigue syndrome. This post-infective fatigue syndrome phenotype was stereotyped and occurred at a similar incidence after each infection. The syndrome was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors.
Dubbo Infection Outcomes Study Group. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study (PDF Download Available). Available from: https://www.researchgate.net/public..._non-viral_pathogens_prospective_cohort_study [accessed Feb 27, 2016]. "
the above is why I personally believe that many ebola patients will be ending up with ME/CFS, it don't seem to matter what you get but the severity of the infection you catch. Keep an eye out for media reports of those which got infected such as the UK nurse who is back in hospital re complications from it again (but the article I read didn't say what the complication was could she now be in hospital due to CFS?).
my mother is the other extreme. everthing was talked down as 'all ppl have something'.
i agree, that the child adapts this 'stance'.
i did and throughout life doctors seemed to confirm that nothing was really wrong.
so i concluded it must have psychosomatic or psychoother reasons.
i just couldnt figure which, but ran through probably each psycho-test on the net.
today i think, i should have seen meirleir while still able to.
but... by this time i certainly would have rejected the whole pathogen-thing
and definitely an idea to take abx for any extended time.
something potent provokes the immune system
the immune system in part goes haywire and never shuts down properly (B cells but what else?)
But like with many autoimmune illnesses: what the hell is the true underlying cause of all this?
A long term "stealthy" infection like a retrovirus, Herpes or Lyme?
Or a synergy of these kind of things resulting in a random breakdown of the immune system?
the similarities between M.E., Gulf War Syndrome, pesticide poisoning, Aerotoxic Syndrome, and some others are too much to be mere random chance, more like a common autoimmune response screw up as a similar "pathway/system", or part, is screwed up in similar ways by all of them?
Ebola 'devastates long-term health'
Pure speculation, but at this point I'm leaning toward something being out of whack with the microbiome before you get some kind of infection and the resulting immune reaction. In developed countries, I could imagine that imbalance being due to the consumption of lots of refined sugar. That might disproportionately feed certain constituents of the microbiome, like candida or other fungi. The body may be able to deal with that kind of "overgrowth" until a large immune system event like an infection occurs, and then something goes off the rails. Just my "gut instinct" - - for the moment at least.
If ME is more rare in the third world (and I'm not sure it is), consuming less refined sugar might have something to do with it.
I'm not sure whether it's rarer in the third world either, and they often consume a lot of starch in poor countries (or at least the poor do), which may be (almost) as bad.
It has been a while since we've seen any updated and good articles written by experts on this topic but it's a very important subject and needs attention.
Parents are still falsely being accused and families are still being ripped apart. Even if attempts to remove children from homes are unsuccessful, enormous damage can be done.
Even when professionals are not involved, there can still be attacks from misinformed and misguided (although perhaps well intentioned) family members, friends, neighbours, etc. Reputations are needlessly attacked and massive damage can result to those already in fragile health.
To zero in on some of the points Dr. Bell is making in regards to Munchausen's or Factitous Disorder, he makes a lot of very good common sense points which seem obvious but are usually overlooked in these situations.
“...children and adolescents, along with their parents are frequently accused of illness falsification in order to escape school attendance or to elicit sympathy from family members. Commonly, they are diagnosed with Munchausen’s Syndrome by Proxy, a subset of patients with ‘factitious disorder’ (FD).
“...the essential feature of both MSBP and factitious disorder is the intentional and conscious imitation or production of illness. While there have been legitimate controversies concerning ME/CFS, the intentional or conscious attempt to feign the illness is close to impossible because of the complexity of the symptoms. Very few medical providers are even aware of the ME/CFS symptoms involving sleep, orthostatic intolerance, post-exertional malaise and sensory sensitivities. If pediatricians were better aware of ME/CFS, MSBP or factitious disorder would not enter the conversation.”
“In the IOM report, specific mention is made of the serious nature of the disease, and it is only natural for a parent to emphasize the seriousness of the child’s condition in the face of a medical environment that may dismiss the illness as hypochondriasis. In this context, enmeshment, or overly sympathetic parenting is not MSBP because it is not a deliberate attempt to cause illness. It is an attempt to portray to which a child is compromised by an illness over which they have no control.”
“One important question remains however: can an overly sympathetic parent cause activity limitation in an adolescent? While this has never been answered scientifically, it is highly unlikely. Behavioral problems caused by family dysfunction usually result in hyperactivity not hypersomnolence. An overindulged and undisciplined child is clearly not characterized by activity limitation. And in the era of rheumatic fever, where strict bed rest was prescribed as a treatment, it was invariably unsuccessful.”
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