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Sam Cam’s sister stricken with M.E. for a year | Daily Mail | 27 June 2015

Discussion in 'General ME/CFS News' started by worldbackwards, Jun 27, 2015.

  1. worldbackwards

    worldbackwards A unique snowflake

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    Last edited: Jun 27, 2015
  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    From the article:
    ‘I recovered from a year of ME by diving into the crystal sea, the cold literally shocking the sickness out of my system,’ she says.
    ‘You emerge from those waters with an icy clarity about your life, a pure, beautiful, brilliant adrenaline-fuelled thrill at the joy of being alive.’
     
    And she is the sister-in-law of the British Prime Minister?
    OMG is not a strong enough expression.
     
  3. worldbackwards

    worldbackwards A unique snowflake

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    Next week, a minor royal recovers from MND after a prolonged bout of foot tickling. Stay tuned.
     
    MeSci, Scarecrow, Aurator and 7 others like this.
  4. Revel

    Revel Senior Member

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    Who knew? Forget Lourdes, I'm packing my waterwings and booking my ferry ticket across the Irish Sea asap!!

    County Galway, a site of pilgrimage for CFS/ME sufferers worldwide . . .
     
    MeSci, Aurator, SDSue and 9 others like this.
  5. Battery Muncher

    Battery Muncher Senior Member

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  6. Snow Leopard

    Snow Leopard Hibernating

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  7. Sasha

    Sasha Fine, thank you

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    In fairness to Sam Cam's sister - real person, real feelings, public thread, let's remember :) - I had a remarkable improvement in my bedbound, several-years-long, having-my-food-cut-up-for-me, acute-postviral-onset CCC/ICC ME after several weeks of daily cold water therapy, which I've posted about elsewhere:

    http://forums.phoenixrising.me/inde...or-me-to-break-pain-inflammation-cycle.23803/

    It lasted for a couple of weeks until I caught some bug and relapsed, and the therapy had no further effects. I was trying this because of what sounded like some interesting preliminary findings and science, brought to us, ironically, by the Daily Mail. A real shame the scientist behind it didn't follow up properly because it sure as hell did something spectacular for me, even temporarily.

    We don't know what works in this disease, or what the disease is, or subsets...

    I'm glad she's recovered. We're very close to getting real answers from our scientists now and the days of this being the only kind of ME story that the Mail does will soon be in the past (but they'll always be there - MS has this kind of stuff, I think).
     
    SDSue, zzz, Sushi and 6 others like this.
  8. Sidereal

    Sidereal Senior Member

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    Many people have had transient improvement with cold therapy. It has nothing to do with magical healing properties of the sea.
     
    zzz, Sushi, SOC and 5 others like this.
  9. "We have treatments to remove your Jewish taint, or black skin that only apemen have, the depraved perversity of homosexuality, or moral weakness that leads to these malingering excuses for ailments!
    Only untermensch fall prey to these delusions called "M.E" or Fibro, but here our glorious ubermensch show you how to be above such things!"


    THAT is the underlying message you will note in many such articles those kind of tabloid rags spout
    think about it.
    That nasty crap is not new and never went away, it's centuries old.
    they must also show that they, the Elite, are above such things, as they are the natural leaders who's "good blood" is above such things.
     
    Woolie and Wildcat like this.
  10. Sasha

    Sasha Fine, thank you

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    No, I agree it doesn't, and if we're looking for a spokesperson for better research funding, I don't think we've found them here.
     
  11. Marco

    Marco Grrrrrrr!

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    I just took this as another fluff piece but I know of at least one PWME who has had substantial improvement (not cure) using regular cold exposure (iced bath) and I get substantial but temporary relief with full immersion in cold water.

    Theoretically there may be benefits via cold induced upregulation of mitochondrial function via PGC1a or heat shock proteins (which are also neuroprotective) plus immersing your face in cold water is one way of improving vagal tone.

    While I'm pretty sceptical of this story as it stands I wouldn't entirely rule out the possibility of benefits.

    PS - one Russian bloke (Nik Shevchuk) even published a hypothesis paper suggesting cold water therapy for 'CFS' - in theory - I don't believe he ever tested it.

    Edited to correct crap typing.
     
    Last edited: Jun 27, 2015
  12. Esther12

    Esther12 Senior Member

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    Yeah. It can be hard make sure legitimate concern about the coverage doesn't sound like criticism of the person, who sounds like they had a year of health problems.

    She was only ill for a year, so who knows what was the problem, but this is just another illustration of the danger of anecdotes. I've seen people here suggesting that if the relative of some prominent person was ill with ME the condition/research would be taken more seriously, but given the way ME/CFS is diagnosed and how fluctuations in health/improvement can end up being associated with all manner of quackery, there's a real likelihood that it would not go well for us.
     
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  13. Sean

    Sean Senior Member

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  14. alex3619

    alex3619 Senior Member

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    Cold therapy is an old therapy in ME. I recall when it was new. It shocks the autonomic nervous system. Some have improved. That fact that this therapy is almost never talked about now suggests that its not reliable.
     
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  15. worldbackwards

    worldbackwards A unique snowflake

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    I started this thread because I hate the Mail, and as a warning to those who felt that previous coverage there had indicated a new friend in the media. No ill-will to collateral damage was intended!
     
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  16. user9876

    user9876 Senior Member

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    Given its the Daily Mail we don't even know what she is claiming as opposed to that the reporters report
     
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  17. Esther12

    Esther12 Senior Member

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    Yeah, I thought people had been good at it, but it's just worth making explicit in case some new-comer stumbles on the thread and gets the wrong idea. (Prejudices around ME/CFS may have made me a bit paranoid about us being misrepresented).
     
    Sasha and worldbackwards like this.
  18. Revel

    Revel Senior Member

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    Well here's my experience of cold water therapy:

    When I was 15, and in the grip of a ME relapse, I was admitted to the local mental hospital (I live in the UK, enough said).

    Part of the 'treatment' protocol was exercise (naturally). As I was unable to comply with the physical demands that were initially recommended, I was prescribed weekly cold water swimming instead. Every Friday morning I was forced into the pool and, since I was too weak to actually swim, I was left to stand, up to my chest in cold water for 45 minutes each session.

    Prior to my "swim" I was able to walk to the poolside. However, post-"swim", I had to be carried out of the pool and put to bed. I was virtually hypothermic, unable to move or speak, my heart beating on the go slow and blue from head to toe. I weighed less than 6st and yet it was deemed perfectly reasonable to subject a child to such torture - and torture it was. Despite seeing absolutely no improvement whatsoever in my condition, this regime was continued for 9 months.

    Lucky for me, I was sprung from this hellhole by the need for urgent non-related surgery, otherwise I truly believe that cold water therapy would eventually have been the death of me.
     
  19. Wildcat

    Wildcat

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    And those doctors are still running amok in the nhs . So sorry Revel. that is beyond malpractice. Its criminal.
     
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  20. Kina

    Kina Admin Support Staff

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    Would it be acceptable to suggest that jumping into the cold sea cured Cancer, AIDs, Alzheimer's, Autism, Diabetes etc etc etc.? If the story was about any of these illnesses, how ridiculous would it sound? "I had cancer for a year, went for a cold swim and I am cured"

    Sounds to me like she recovered from
    depression
     
    Raines, lycaena, justy and 9 others like this.

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