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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Wessely honoured with a knighthood for his work for GWS and ME

Discussion in 'General ME/CFS News' started by Countrygirl, Dec 29, 2012.

  1. user9876

    user9876 Senior Member

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    Part of any classification or clustering process is to have a defined feature space. Hence a precursor to clustering on a the whole cohort would be to have a consistant way to describe symptoms. This would mean doing things like defining a more accurate language to describe fatigue and other symptoms.

    It does seem strange to me that no one has done this especially given it would be easy enough to use standard questionaires across multiple treatment centers, scan them then there is database software that will do much of the analytics.
  2. Firestormm

    Firestormm Guest

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    Prof. Julia Newton by any chance? Autonomic dysfunction in fatigue-associated diseases including, most especially, ME. Several papers published, but her recent presentation (that I am transcribing) to the AFME AGM in November, showed how cognitive problems are a likely casualty.

    Most recent thread here: http://forums.phoenixrising.me/inde...tics-of-novel-subgroup-cfs.20807/#post-316068

    Will shove the transcript on the forum when I have done the darn thing :)
    Bob likes this.
  3. Enid

    Enid Senior Member

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    The man needs to go to a psychiatrist - delusions of grandeur - poss some Freudian need to prove SW - so very happy to deny science - well they always were.A real personality problem for sure - he not seem to know the difference between real illness and his airey fairy nonsense. (though much shifting of position around his "unexplained" illnesses seems to going on now).
    Kati likes this.
  4. dannybex

    dannybex Senior Member

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    Sigh.

    Here are some studies showing links...about halfway down the page:

    http://www.lassesen.com/cfs/index.php/archives/440/?fb_source=pubv1

    BTW, Ken Lassesen, the blog's author, was recovered from ME/CFS for over 10 years, full of energy and working full time, until this past spring, when he suffered a relapse.

    He's currently about 40-50% recovered, and just did his first hike yesterday, starting out slow, and cutting the distance down to 20% of the usual hikes he's been doing for the last 7-10 years.
    Valentijn likes this.
  5. Ember

    Ember Senior Member

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    Here's the study's rationale for using a SF36-PF cut-off as a “functionally meaningful case definition:”
    Although the study states that “memory and concentration difficulties and disturbances of mood are among the most commonly reported symptoms associated with service in the 1990–1991 Persian Gulf War,” the cohort is nevertheless selected using a physical-function scale:
    A comparison with "chronic fatigue sufferers" appears in the conclusions:
    More: [PDF] David 2002 - cognitive function.pdf - King's College London

    See also: "Postviral fatigue syndrome and psychiatry" (David, 1991)
  6. biophile

    biophile Places I'd rather be.

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    A sign of things to come for CFS and CBT/GET?

    So, what PACE would regard as "normal" physical function then.
  7. alex3619

    alex3619 Senior Member

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    Hi user9876, symptom sets for clustering are much less important than biochemical or physiological data for clustering. These will give us diagnostic and treatment biomarkers, and a clue as to treatment or cure. The systems biology researchers are working on this.

    My guess is that most biomedical researchers have mainly looked at chemistry etc, so did not focus as much on symptoms, while the psycho-psychiatric researchers see no need. Part of the problem also might be a lot of the recorded data is "patient with fatigue", "another patient with fatigue", "yet another patient with fatigue" - not very useful for clustering.

    Such patient/symptom/test databases for datamining etc. is the current focus of several projects I am aware of, though I do not recall specifics. I think PR has one, CAA has one, and there is another one? None are complete I think. The CAA one might be the best funded.

    Once we get such databases running then clustering algorithms can take care of the rest.

    Bye, Alex
  8. Kati

    Kati Patient in training

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    In regards to forcing obese people to exercise, funny thing that smoking is not being act upon in the same way considering that cigarette causes a whole array of conditions and diseases, mortality and morbidity. What's the difference?

    I would suggest that attachment with tobacco industry and the fact that decision makers who are smokers themselves create a problem, but that is a topic for another time, I guess...
  9. Valentijn

    Valentijn Activity Level: 3

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    72.7 is a very high value. The test makers say average is is 84, with a standard deviation of 23. My score was 20, and I recall the Rituximab trial showed something similar for ME patients. Looking at the lowest 10% for a disease likely affecting a much smaller percentage is just daft.
  10. Firestormm

    Firestormm Guest

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    You are right of course Kati. Ban tobacco, Ban Alcohol, Ban Saturated Fat, Ban Junk Food, Ban Sugar etc. etc. It all a lot of nonsense this tinkering around the edges. Westminster Council are taking the ****. I had to laugh. One chap who was on benefits IN WESTMINSTER :aghhh: and was using his free gym membership was interviewed - whilst smoking a fag!! When asked (BBC Radio 4) he said: "Well you have to have some vices, don't you?" Good on him I say. Not only is this proposal 'nuts' it goes against freedom of choice. Westminster Council want to charge people through Council Tax penalties for not using their free gym memberships - it's crazy-ass-bonkers. Mind you it will probably happen. Anything to squeeze benefit scroungers out of Westminster - and now the Housing Benefit lot of bums are being evicted - it's open season for plebs :)
  11. Kati

    Kati Patient in training

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    I will add that obesity is a complicated issue. Back in the years, say 50 years back when people worked in the fields, I bet there was no obese people. We are more sedentary, the phenomenon of fast food, video games, TV, media, more refined food, perhaps biology (genetics, endocrinology,etc) all play factors into obesity. There are no easy solution, however telling an obese person to simply exercise is not the answer (in my opinion). It is too simplistic.

    As for smoking- talk about the government being in bed with the tobacco industry- if there was no such alliance, cigarettes would be banned, and no one would be smoking- but then that is complicated too, right- there would be smuggling and theft and pretty angry people.
    Valentijn likes this.
  12. dannybex

    dannybex Senior Member

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    There were also virtually no vegetable, nut or seed oils 50+ years ago, until they found they were useful for fattening up cattle and pigs. We've been inundated with waaaay too much of these omega six oils, which are said to strongly inhibit mitochondrial function, thyroid function, etc., etc..

    And then there's high-fructose corn syrup...on and on and on....
    Shell likes this.
  13. user9876

    user9876 Senior Member

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    Your right. I was thinking that is an approach that even th pschiatric researchers could have followed if they were interested in understanding the disease better.

    That was my point about needing a well defined language to describe features of fatigue. As opposed to a scale where you simply add up question results.
  14. Firestormm

    Firestormm Guest

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    What about the land-owning peasant pheasant munchers :) Wasn't gout a major concern. Only kidding. Partly. I think each era has it's own concerns. And yes I dare say that in the 50's or 60's there were less concerned with obesity and more concerned with err... growing pot and chillin' :)
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    If we were driving benefit scroungers out of Westminster, first to go would be the corrupt, nepotistic, incompetant traitors in Parliament!
  16. Kati

    Kati Patient in training

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    in the 40's and 50's people were more conerned about making babies. My grandparents got 16 of those!
    Firestormm likes this.
  17. Firestormm

    Firestormm Guest

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    Just noticed you and Alex having this exchange. Has this review affected your views in any way? I refer to the excerpt I posted from the review:

    http://forums.phoenixrising.me/index.php?threads/functional-somatic-syndromes-may-be-either-“polysyndromic”-or-“monosyndromic”-peter-denton-white.21181/

    Be interested to hear your thoughts:

  18. user9876

    user9876 Senior Member

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    Don't forget that Ken Clarke worked for BAT pushing cigarettes to the third world. On the one hand we have politicians saying poor people shouldn't smoke, drink and eat junk food but on the other we have the companies that back them making the profit from this and spending millions in advertising to do so.
  19. Firestormm

    Firestormm Guest

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    And happy to take the duty (tax) :)
  20. alex3619

    alex3619 Senior Member

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