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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Misreporting of CFS at my local hospital

Discussion in 'Petitions' started by LivingwithFibro, Aug 9, 2017.

  1. LivingwithFibro

    LivingwithFibro Lily

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    I've been meaning to ask my PR family about this for ages but I found the energy today it seems. The most famous and prestigious hospital and medical university is misreporting on my disease and this greatly disturbs me. I've been thinking of starting a petition regarding this and would appreciate your ideas.

    "Doctors have come up with a list of conditions which are specific to Chronic Fatigue Syndrome, to specify the disease. Otherwise, the symptoms of CFS mimic those of other diseases. Our doctors at will rule our other disorders to diagnose CFS.

    • Sleep Disorders
    A sleep test will be conducted to check if you sleep restlessly at night. The test will highlight sleep problems like sleep apnea, restless leg syndrome or insomnia. Sleep disorders are a key cause behind Chronic Fatigue Syndrome.

    • Mental Health Issues
    Depression, anxiety, bipolar disorder andschizophrenia are mental disorders that can be accounted for Chronic Fatigue Syndrome. Our doctors will diagnose you for these before suggesting a treatment for CFS

    • Medical Problems
    Fatigue is a normal indication of many medical conditions, such as, diabetes, anaemia and underactive thyroid (hypothyroidism). Our doctors will conduct lab tests for blood which will check for evidence of some of top such disorders.

    https://hospitals.aku.edu/pakistan/diseases-and-conditions/Pages/chronic-fatigue-syndrome.aspx

    Please check the link above and go through every section.
     
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Their approach is not all that unusual as you probably know from reading here.

    I think it would be good for you to clarify exactly what it is you want from them in terms of change.

    I know we have many petitions and while they can be useful there may be other options to pursue. And this is just my opinion but it might be worth waiting a bit longer to present them with better/stronger evidence that will be harder for them to ignore.

    As you may know, the CDC (and I believe the Mayo clinic) in the US changed some of the info on their websites recently but my understanding is that the change is not an entirely clear break from an CBT/GET recommendation.

    I don't know how much support you have or your functioning level but it might be worth investigating which journalist would be good to approach to see if there might not be an opportunity to get some accurate reporting on ME. Changes aren't likely to happen in a vacuum. Do you know of anyone else who's ill near to where you live? If you want to effect some change I think it's best to have people local 'on the ground' so to speak to help with lobbying efforts.

    I expect that some of this might sound overwhelming to you. But it stands to reason that there must be some fellow people with ME where you live. If you're looking for things to change that's where I'd start.

    That's not to say you can't just go ahead with a petition. I'm sure others here would sign. But my opinion is that alone it won't do much to affect change.
     
    Last edited: Aug 11, 2017
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  3. Wonko

    Wonko Senior Member

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    The other side.
    It looks to me like it's' just poor translation, all of those tests should really done to rule out other, treatable, conditions, and IMO, translation aside, it doesn't look like there is anything particularly objectionable on that page.

    edit, if you remove most of the uses of "syndrome" leaving "chronic fatigue" then it all looks fairly standard - they have to exclude other causes of chronic fatigue before they can give you a diagnosis of CFS. I wish it was easy to get that sort of workup in the UK.
     
    Last edited: Aug 9, 2017
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  4. LivingwithFibro

    LivingwithFibro Lily

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    Maybe. Perhaps it doesn't make sense for them to change anything until the real cause is found.

    By the way, what do you mean by translation?
     
  5. Wonko

    Wonko Senior Member

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    The other side.
    It makes sense for them to exclude other, potentially treatable, conditions - which appears to be what the page means.

    The page is in English, The hospital appears to be in Karachi. The use of language is not quite what I would expect from a professional person whose first language was English e.g "Problems with memory and remembering stuff" and "Thinning concentration power" whilst okay in general conversation are not sentences I would expect to see on an official site written by an native English speaker - hence my conclusion that the original had been translated from some other language.

    edit...oh and they also appear to be offering some assistance with symptom relief, quite how they plan on achieving this isn't clear but, again, it's more than we get in the UK without years of fighting to be believed.

    Of course, how this is implemented is the crux of the matter, it's one thing to have a web page stating policy but quite another to actually get help, again, at least in the UK.
     
    Last edited: Aug 9, 2017
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  6. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Japan
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  7. Mij

    Mij Senior Member

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    Why aren't they including dysautonomia. This is a huge issue for us and can be temporarily treated.
     
  8. Wonko

    Wonko Senior Member

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    The other side.
    Possibly because it's a hospital webpage and they are all bad - my point was that they seem no worse than any other so a petition to get it changed is unlikely to get anywhere, they'll just point to other institutions pages and say that theirs is in agreement so there is no need to change the page.
     
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