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  1. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    Going back to the enterovirus VP1 protein test, a 1991 paper "Persistent virus infection of muscle in postviral fatigue syndrome" by Cunningham et al says: It is interesting that this paper says that as well as enterovirus infections in the muscles, some ME/CFS patients were found to have...
  2. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    I guess the Internet did not really take off as a source of mass information and reference until around 2000 say; I developed full ME/CFS in 2006 after a viral infection, and via the Internet quickly discovered that Wessely was the chief peddler of this "all in the mind" nonsense about ME/CFS...
  3. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    I know that the biomedical researchers were well aware of Wessely's bad influence on ME/CFS: apparently in the late 1980s, Simon Wessely wanted to place his ambitious mitts on the position of medical adviser to the UK ME Association; Dr Melvin Ramsay’s response as President of the ME Association...
  4. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    It would be interesting to know more about that era, when the tide turned against good biomedical research, and all those implausible psych theories took over the show. Were people aware at that time that Simon Wessely was the driving force behind this sea change, or did that only become...
  5. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    The issue in those days, in the 1970s and 80s, was that the UK ME/CFS researchers were unsure what the high antibody titers to coxsackievirus B actually meant. Was there a chronic enterovirus infection in ME/CFS patients, or are the high titers just due to dysfunction of the immune response...
  6. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    The fact that ME/CFS from mononucleosis is more likely to go into remission suggests to my mind that EBV ME/CFS should be considered a different subset to enterovirus associated ME/CFS.
  7. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    Yes it is most ironic that here in the UK, the country which first made the link between enterovirus and ME/CFS, there is no means to test for chronic enterovirus infections. Which means chronic coxsackievirus B has become an "invisible" infection in Britain. I did not know that. How was he...
  8. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    I had not heard that before, but it sounds about right. Unfortunately it is becoming harder to diagnose enterovirus-associated ME/CFS outside of the US. The only blood tests that are sensitive enough to detect chronic enterovirus in ME/CFS patient are the antibody tests by neutralization...
  9. Hip

    BBC Stories: "I had it all - now I create a new world in a single room"

    It's possibly something along those lines, though we don't have any longitudinal studies on ME/CFS recovery that span decades. This study which followed 33 adult ME/CFS patients for 5 years found that substantial improvement occurred in less than 6% of patients during that time period. But for...
  10. Hip

    Pseudobulbar affect anyone?

    You might be interested in an OTC treatment for the pseudobulbar affect (emotional lability): dextromethorphan (DXM), which you can get over the counter in certain cough mixtures and cough lozenges. DXM is an FDA approved treatment for the pseudobulbar affect. I wonder if DXM might be useful to...
  11. Hip

    It's not malaise!!!

    In a medical dictionary, the term "malaise" comes across as something relatively mild and vague: But I don't how the term is used by doctors on an everyday basis, and perhaps it is used to encompass a more severe state.
  12. Hip

    It's not malaise!!!

    I have pointed out previously that though most people refer to the post-extertional symptoms of ME/CFS as "post-exertional malaise" or "PEM", in fact malaise (which is the feeling you get when for example you have the flu) is just one aspect of these post-extertional symptoms. In the CCC...
  13. Hip

    Treatment suggestions for Orthostatic Intolerance (POTS or NMH)

    A severe ME/CFS patient on the PR forum was able to fully cure their POTS with a vigorous cardiovascular exercise regimen; POTS and NMH respond well to cardiovascular exercise. How you might ask was a severe ME/CFS patient able to perform this exercise? He found he was able to completely...
  14. Hip

    Woman 'with ME' won world kickboxing championship

    I am also at the top end of moderate these days, but seem to be more cognitively affected than physically affected; this may be due to the fact that my ME/CFS appeared to be kicked off by a viral brain infection (meningitis and/or encephalitis), and thus my brain may be more virally impacted...
  15. Hip

    Woman 'with ME' won world kickboxing championship

    It would seem likely that Ruqsana Begun has mild ME/CFS on the scale of mild, moderate and severe. People with mild ME/CFS are able to go to work full or part time, although this is a struggle for them. Whereas patients whose ME/CFS severity is at the moderate or severe level are housebound and...
  16. Hip

    Is this the mechanism underlying PEM?

    Huge amounts of IL-6 appear after exercise (100-fold increase in levels). However, IL-6 is a complex cytokine that has both pro-inflammatory and anti-inflammatory modes: the classical signaling IL-6 pathway is anti-inflammatory and instigates tissue repair, whereas the trans signaling IL-6...
  17. Hip

    News from Scandinavia

    A few years ago when my ME/CFS was approaching the severe level, I'd often have so much shattering fatigue that I'd be in the bed not only during the night, but also much of the day, often drifting in and out of sleep during the day, and feeling so deeply tired that it felt like I was on my...
  18. Hip

    News from Scandinavia

    Chronic fatigue isn't a typical symptom in ME/CFS?! Chronic fatigue or relapsing fatigue is a required symptom for the diagnosis of ME/CFS: The CCC says to have ME/CFS, the patient must have: "a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue...
  19. Hip

    Sickness behaviour – useful concept or psycho-humbug?

    Random mutation and genetic recombination (the random combination of genes received from parents) provides the basis of both natural selection and sexual selection. In natural selection, because of this genetic lottery, some creatures find themsevles genetically better equipped to survive and...
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