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Risk Factors for Severe ME/CFS

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 2, 2010.

  1. Dolphin

    Dolphin Senior Member

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    Dr. Charles Shepherd posted this today:

  2. Dolphin

    Dolphin Senior Member

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    Remember, free full text at: http://biolmedonline.com/Articles/vol1_4_50-74.pdf
  3. Dolphin

    Dolphin Senior Member

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    Generally I thought this was a nice, sympathetic paper with lots and lots of data available
    to the read (sometimes one doesn't get to see a lot of the data).

    Two small/very small quibbles:
    (i) I think they should commented more on the physiotherapy issue e.g.
    physiotherapy in the early stages of the illness, before and after diagnosis,
    could lead to a poorer prognosis. I think if it was another area of medicine,
    if one sees risk factors like this, one highlights them e.g. smoking is a risk
    factor for x or whatever.

    In my own case, I was mildly affected in the early stages and believe
    physiotherapy (and related exercise I was encouraged to do) was a factor in me becoming severely affected. (I don't think I
    took part in this study - I'm a member of the ME Association but they possibly
    restricted it to members in the UK?)

    (ii) it might have been interesting to subdivide vaccinations into:

    a) in the month before became ill

    b) every vaccinated (against particular infections

    Table 12 says
    however I think for immunsiations, that must be whether they were ever
    vaccinated before becoming ill. I think the chances that they are the figures
    for the month before the illness are small (e.g. 85.0% and 78.3% are the two
    groups are listed for the polio group - think these much be lifetime figures).

    There is an error in the discussion (it appears to me):
    However for vaccinations judging by Table 12 and the text alongside it, it
    should be the opposite i.e. "Other less marked associations with severity
    included an **decreased** likelihood among severe cases of having been immunised
    against hepatitis B and smallpox"

    I'll send a quick note to Dr Pheby, I think.

    Overall, probably plenty of useful ammunition there particularly for those with
    severe ME, who are probably most at risk of being portrayed in a negative light.
  4. Kati

    Kati Patient in training

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    Nice article, Tom, I did an overviewof it (a bit too dense for my brain at the moment) and here's a good one that will make Reeve's hair raising a bit...Thanks for posting it.

    On another note, it seems that smallpox vaccination was the major culprit for those that had a vaccination onset. I wonder if it's a regional (UK) difference compared to the American/Canadian model?
  5. Dolphin

    Dolphin Senior Member

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    Thanks. Plenty there of use.
    If ME/CFS is a condition that is brought about by personality and behavioural factors, one would think that the severely affected would be "worse" in these areas but they don't come out that way.

    Remember, that this was just looking for differences between mildly affected and severely affected people. To see if something was a risk factor, one would have to compare with the general population to see if people with ME/CFS were more or less likely to have been exposed - something they didn't do. Also, I don't think the study is that good at looking at the vaccination issue as the figures for vaccinations seem to be lifetime figures - the figures are way too high, it looks to me, for the figures in the month before become ill. I've written to Dr. Pheby on this - if he says, they are the figures for the month before becoming ill, that'd be very very interesting but I can't see that.

    With regard to smallpox, they found that 49.4% of the mildly affected group had had the vaccine versus 31.4% of the severely affected group and that this was significant. I am not sure how to read the statistics i.e. it is somewhat the opposite of what one might expect.
  6. Kati

    Kati Patient in training

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    Thanks for the explanation Tom. I don't know if it only me thinking thatvbut there seems to be more studies coming out.Still impatiently awaiting the replication studies to come out, and words from Dr Mikovits. Now that we got the holidays behind us, scientists can kindly return to their microscopes, microarray, computer station, etc... :)
  7. Dolphin

    Dolphin Senior Member

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    A point of information that people might be interested in is that Dr. Pheby has a son with it (given Dr. Pheby is not young - wild guess maybe 60 - the son is most likely an adult now but possibly not when Dr. Pheby became interested).
    I tend to instinctively look for evidence of people who think we can just exercise ourselves better/think we can get better ourselves but I haven't found such attitudes with Dr. Pheby - he is much seemed much more interested in pacing, like other sympathetic UK experts.
  8. Mithriel

    Mithriel Senior Member

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    Scotland
    I think the small pox vaccination numbers may be a red herring. I am fifty five and we all had small pox vaccinations. I don't know when it stopped being universal, but I think his figures are simply a reflection of age in the groups.

    Certainly, if small pox vaccination was relevant the figures for ME or CFS would be much higher in older age groups.

    I felt the overall tone was good and it was good that he spoke about people's problems with the questionnaires. Maybe further research will be done.

    Mithriel
  9. Kati

    Kati Patient in training

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    I have heard the expression quite a few times here, "red herring"

    What on earth does it mean???
  10. Mithriel

    Mithriel Senior Member

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    It means a wrong path, I suppose. In detective novels red herrings are false clues the author puts in to distract you from the real ones. :)

    Obviously UK, sorry.

    Mithriel
  11. Dolphin

    Dolphin Senior Member

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    That makes sense. The average age of the mild group was older. They didn't do logistic regression on the vaccinations e.g. adjust for age. I don't think they talked about it much in the paper - they weren't seizing on it.

    Dr Pheby is involved in the ME Observatory research and also EUROMENE (as I recall, they're trying to get EU research money).

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