Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Wigan Today: Chronic fatigue sufferers could benefit from new research

Discussion in 'Latest ME/CFS Research' started by AndyPR, May 10, 2017.

  1. AndyPR

    AndyPR Senior Member

    One not to look out for, in my opinion.
    http://www.wigantoday.net/news/chronic-fatigue-sufferers-could-benefit-from-new-research-1-8534430
     
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  2. RogerBlack

    RogerBlack Senior Member

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    This research must already have been funded, have ethics approval, ...
    Can anyone find a link to that?

    http://www.theperrinclinic.com/muscle.pdf


    [​IMG]

    I question the technique. But they're actually attempting to then go on and do actual measurements, with real muscle force meters, which is great.
     
    Last edited: May 10, 2017
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  3. Chrisb

    Chrisb Senior Member

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    As the earwig said when it fell over a cliff "'Ere we go again".

    Blame regression to childhood.
     
  4. ChrisD

    ChrisD Senior Member

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    Can't stand the stock images they use on these articles for ME/CFS. If you imagine yourself as an outsider looking into the illness and you cast your eye on an article with a stock image of a desk worker with head in hand or a child asleep on a desk, then it will immediately turn off the reader's attention as it just appears as 'run-down' or general fatigue. Somehow we need to not only change the general public's opinion but also the media perspective. I always think that it is quite promising when media outlets start to use fancy graphics of B-cells/Immune cells/Microbiome for CFS articles to validate it as what people perceive as illness or virus.
     
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  5. Snow Leopard

    Snow Leopard Hibernating

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    Hyping studies before they're published is really gross.
     
  6. Chrisb

    Chrisb Senior Member

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    Is there any evidence for the entrapment of toxins in the fluid around the brain and spinal chord? Have they all along been aware of a previously unknown biomarker?
     
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  7. trishrhymes

    trishrhymes Senior Member

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    But what are they actually measuring?
     
  8. Deltrus

    Deltrus Senior Member

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    Well when I used sauna for a few days I became delirious and had to go to the hospital from all the toxins floating around in my cns. I also have neck tightness. I wouldn't be surprised if there were toxins hidden away.
     
  9. TiredSam

    TiredSam The wise nematode hibernates

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    It's an advert. He's put his name on it and protected it, now he's got to sell it.

     
  10. Diwi9

    Diwi9 Senior Member

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    I should not be cynical, but I can't help but think that since the NHS has been called out for CBT and GET being ineffective, the next CHEAPEST option is massage. Still, if this one actually helps or makes people feel better and acknowledges a biological factor, it's an improvement.
     
  11. RogerBlack

    RogerBlack Senior Member

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    I disagree.

    Maximal knee extension force.
    Push as hard as you can for 3s, then wait 3 minutes, and 10 reps at 33% of this force, wait 3 mins, and then maximum effort for as long as you can. Measure forces, and surface EMG.

    It would in principle be an interesting test, if the second push was lower, due to fatigue.

    A major worry with the above study to me is the unexplained difference in force differences betweent he two groups of CFS patients.

    The first group (CFS1) was the study group, the second (CFS2) was the control who did not get the laying on of hands.
    CFS1 patients had a force of 47, and difference of 13 between first and last, CFS2 however, was 52 (broadly comparable) - but the difference was 2.
     
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  12. slysaint

    slysaint Senior Member

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  13. HowToEscape?

    HowToEscape? Senior Member

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    That isn't evidence for toxins, it's evidence that you should stay out of the sauna.

    Most of us have very poor tolerance for heat, I wouldn't be surprised if me doing a trip to the sauna was followed by former me doing a trip to the morgue
     
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  14. Deltrus

    Deltrus Senior Member

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    Yeah possibly.
     
  15. Valentijn

    Valentijn Senior Member

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    The heat badly aggravates any problems with circulation. Usually when hot our blood vessels dilate and move closer to the surface of our skin. This lets the warm blood be cooled by the cooler air.

    But when in a hot environment, this cooling mechanism completely fails. Heart rate rises to try to pump blood faster to the places where it can be cooled, but it's not finding those places, because there aren't any.

    Healthy people can handle this at certain temperatures for a limited amount of time. Sick people usually can't handle this, which is why people with certain conditions (pregnancy, heart problems) are expressly forbidden to use hot tubs or saunas.

    This is why I can't take baths anymore, and keep my shower from getting too hot, and the air circulating. If I do take a bath, my heart rate rises substantially and can take days to go back to normal.
     
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  16. lansbergen

    lansbergen Senior Member

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    I could not tolerate hot baths for years but now I can again and enjoy it.
     
  17. Sean

    Sean Senior Member

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    Don't have a bath, but hot showers are a mixed bag for me. They can be quite tiring if they go on for very long. On the other hand, they are very good for helping aching muscles to relax, and encouraging blood flow near the skin.

    I find ending a hot shower with 30-60 seconds of relatively cold water works well. (By relatively cold I mean 20-25 degrees C, not barely above freezing.)
     
    Last edited: May 12, 2017
  18. wastwater

    wastwater Senior Member

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    It's a no from me this has been around for years makes a mockery of me/cfs
     
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  19. Large Donner

    Large Donner Senior Member

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    Ye except they will then come up with online massage or a self help massage dvd cos massage costs about £50 session. They may even come up with a scheme for a free diary to fill in to keep details of "how i massaged my own back today", to be taken to the GP to review.
     
    Last edited: May 12, 2017
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  20. Chrisb

    Chrisb Senior Member

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    I have been trying to envisage what sort of contractual, licensing and fee (in either direction) arrangements would have to be in place to enable an NHS Hospital to conduct a trial of a process trademarked and licensed by one of its staff members. It will be interesting to see details of the funding arrangements.

    It would be interesting to see how nhs time and facilities are costed and whether full costs are recouped from the trademark owner.

    Perhaps all will become clear. I am not confident.
     

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