Invest in ME Conference 12: First Class in Every Way
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Teenager who diagnosed her own rare illness (after being diagnosed with CFS) - Times article

Discussion in 'General ME/CFS Discussion' started by sarah darwins, Aug 16, 2016.

  1. sarah darwins

    sarah darwins I told you I was ill

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    This is from The Times (of London), for which I have an online subscription. There are probably other articles out there with free access, if someone wants to get Googling (I have to go out soon and don't have time)

    It's about a brilliant 13-year-old girl who figured out her own diagnosis after doctors had dumped her in the CFS waste basket.

    This seems to me an excellent example of the damage the catch-all CFS conception can do.

    [my bolding throughout]

    It's a long article so I've quoted a bit more than I usually would from a newspaper (hope The Times will forgive me) but it's interesting stuff.

    Link for anyone with Times access: http://www.thetimes.co.uk/edition/times2/how-a-teen-diagnosed-her-own-rare-illness-gct2gd2qx
     
    Last edited: Aug 16, 2016
    leela, svetoslav80, OhShoot and 22 others like this.
  2. barbc56

    barbc56 Senior Member

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    I've gone to the site but can't access the whole article. If offers two types of memberships but it says nothing about cost other than you need to put in information to get the price.

    Did I misread or is the Is the quote above the full article?

    Edit.

    The only reference to this story when I googled was the above source.
     
    Last edited: Aug 16, 2016
  3. sarah darwins

    sarah darwins I told you I was ill

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    I'm afraid it's paywalled and subscription-only, barbc. That's why I quoted quite a lot. You would have to sign up for a full, ongoing subscription to access it. I don't think I can quote more than I have without treading on copyright toes.
     
    barbc56 likes this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    It does go to show that there is a feed back loop in medical diagnosis.
    The HPV vaccine is new.
    A disease may be rare simply by virtue of being rarely diagnosed (don't mean to suggest this particular disease necessarily).

    Are we seeing the opposite effect in the UK re ME. Now that they've rolled out an 'effective' treatment anyone can be diagnosed with it (and are) --trust them.

    This article coming from the Times must rankle-- I don't think they've BPSed that particular disease yet.
    Thankfully for the clever young lady she now might get proper treatment.
     
  5. wastwater

    wastwater Senior Member

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    I'm in a similar position,might even make a new discovery,it's hard to get people on board though.
     
    sarah darwins likes this.
  6. Daffodil

    Daffodil Senior Member

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    so this is different from the term "vaccine injury"? i guess thats a waste basket diagnosis too.

    i wonder what medicines they are giving her.

    at least they didnt put her in a psych ward
     
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  7. frog_in_the_fog

    frog_in_the_fog Test Subject

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    You have cfids, good luck to you, see you again in six months...
     
    Daffodil likes this.
  8. CaronR

    CaronR

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    In the UK, and also in other countries, the pattern seems to be that girls are developing autonomic problems (dysautonomia) after their HPV vaccination - many of them meet the diagnostic criteria for POTS or Complex Regional Pain Syndrome, but many also have the same cluster of autonomic related symptoms but don't meet the diagnostic criteria for POTS. It depends which country you are in for the diagnosis you're given. In the UK it's usual for the girls to be given a diagnosis of Chronic Fatigue Syndrome, told there's no treatment other than pacing, CBT and GET, and left to their sick beds. The 'lucky' girls, like Amelia in the article, are switched on enough, or have someone close who is switched on enough to start Googling and digging and they find their way to a dysautonomia diagnosis, for which there is treatment, but no cure.

    Naturally the powers-that-be deny any link with the cases of dysautonomia and the HPV vaccine, but there is an increasing amount of research and case studies to rubbish this view and to make a case for proper studies. Whether it will happen or not is anyone's guess, but the numbers will soon be too hard to ignore. In Denmark, regional centres have been set up specifically to assess girls with serious health issues after HPV vaccination, and at one of the centres, the doctor is on record as quoting 1 in 500 girls vaccinated is suffering serious adverse reactions. A support group in Ireland has also estimated from their membership that approx 1 in 500 vaccinated are suffering serious adverse reactions to the HPV vaccine.

    Disturbingly, but similar to ME patients - a lot of these young teenage girls are being diagnosed with mental health conditions such as Anxiety disorder or Conversion disorder. Getting taken seriously is very difficult, as you well know, and more so if you're a teenage girl!!
     
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  9. wastwater

    wastwater Senior Member

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    Does this have link to guillain barre
     
  10. sarah darwins

    sarah darwins I told you I was ill

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    I think that's one of the most worrying parts, Caron. Amelia's parents said they more or less hoped that she 'just had chronic fatigue'. Clearly they had picked up from the 'experts' that this would be pretty normal [for a young girl!] and nothing to worry about.
     
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  11. Forbin

    Forbin Senior Member

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    Both pandysautonomia and Guillain-Barré syndrome seem to fall under the heading of "acute autonomic neuropathies."

    http://www.medmerits.com/index.php/article/acute_autonomic_neuropathies/P2


    It's interesting that the section on pandysautonomia also says:
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    Good question. The onset of my illness was "Guillain-Barre Like", eg within 3 weeks of an immunisation too, and my primary symptoms was acute flaccid paralysis of calf muscles, difficulty swallowing and dysautonomia.
     
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  13. natasa778

    natasa778 Senior Member

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    I wasn't aware of this thread so started a new one here, with links to another article giving more details ...

    http://forums.phoenixrising.me/inde...er-own-rare-illness-written-off-as-cfs.46459/

    He put Amelia on a course of immunotherapy using steroids and immunoglobulins.
     
  14. barbc56

    barbc56 Senior Member

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    @natasa778
    I get an error message when I clicked on your second citation.

    The only thing that comes up when I google are the threads here and several sites where you are redirected to the original article which is behind a paywall. On the second page a video consultation service, an anti vaccine and another ME/CFS site are the only references I could find.

    The complete article can be found here!

    While these sites, in themselves may be reporting a valid story, it still bothers me that this isn't widely covered in the media. I don't buy into any conspiracy theories.

    With so little information, it's hard to know what to make of this story.

    Disclosure. My googling skills sometimes suck. If anyone can direct me to a site, it would be appreciated.

    Thanks!

    Edit. I am replying to the first post @

    http://forums.phoenixrising.me/inde...er-own-rare-illness-written-off-as-cfs.46459/

    @Kina @Sushi Should these threads be merged?
     
    Last edited: Aug 28, 2016
  15. barbc56

    barbc56 Senior Member

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  16. natasa778

    natasa778 Senior Member

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    Yeah, if something is not widely reported by the mainstream media then it cannot possibly be happening. There is no reality outside what MSM tells us. For real!!

    :wide-eyed::wide-eyed::wide-eyed::wide-eyed::bang-head:
     
    leela likes this.

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