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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How would it change you if this was a medically recognisable illness?

Discussion in 'General ME/CFS Discussion' started by digital dog, Nov 13, 2015.

  1. digital dog

    digital dog Senior Member

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    I know it wouldn't change us physically but how would it change your life if ME was a recognisable illness and the media was on our side and people knew just how sick we truly are?

    A lady at my daughters school had cancer (she is ok now thankfully). People rallied around her but she did a marathon during chemo for FS!

    Do you think we will ever get the compassion and understanding we deserve? It would appear that we suffer much more than the majority of other illnesses in terms of quality of life but get the most stick.

    I don't even bother saying I have ME. I say I have thyroid issues as after 18 years I cannot stomach the prejudice and ignorance.

    If we could just get a few documentaries on prime time TV then at least SOMEONE might have a better understanding of the level of suffering.

    My hope is for the rituximab trials and all the people who have taken it to throw themselves at the media. I would like to think that if any of us did get better we would not forget those left behind.

    I wish people understood. I wish people could just feel as we do for a day.
     
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  2. Ellie_Finesse

    Ellie_Finesse Senior Member

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    On this, I don't really know how I would feel...... At least we wouldn't have to keep explaining and justifying why we can't do normal every day things. Quite frankly, I am finding it exhausting, and frustrating? Luckily, and I know this isn't the same for most of you, I have a very understanding family :)

    Sadly, I have a feeling that, if we do, there will have to be some kind of scientific break through that is so convincing, it can not be ignored. Could be years away before we see that!

    I hope I am making sense, cause reading it back it's sounding like gobbledygook! :thumbdown:o_O
     
  3. Countrygirl

    Countrygirl I'm with Cheesus

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    Excellent question...........but one point and, I think, an important one: I think the illness is still under a D rating, so no chance of getting the media to document the true story.

    The excellent Film Voices from the Shadows could have been shown, I was informed, but the brilliant people who made it, I heard, were told that any reference to ME itself had to be removed and they refused to grant their permission to have it shown unless the name of the disease was acknowledged on the programme.

    I guess, but don't know, that the SMC is the censoring body.
     
  4. worldbackwards

    worldbackwards A unique snowflake

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    Bloody hell, really?
     
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  5. Sidereal

    Sidereal Senior Member

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    :jaw-drop::jaw-drop::jaw-drop:
     
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  6. daisybell

    daisybell Senior Member

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    It would be lovely not to have to feel concerned about people's reactions. To be able to say "I have ME" without fear of ridicule or of scorn.... And to have the medical profession act appropriately...... Now I'm dreaming!!
     
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  7. worldbackwards

    worldbackwards A unique snowflake

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    Can you explain to me what this means?

    *me being a thicky*
     
  8. SOC

    SOC

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    Surely the SMC doesn't have the power to control what goes on prime time TV. o_O

    Frightening if they do in a supposedly democratic free-speech nation.
     
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  9. Battery Muncher

    Battery Muncher Senior Member

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    It would make a huge difference to my life if ME/SEID became medically recognised.

    For starters, I might actually get Disability welfare payments, which would let me give up this awful job that is slowly destroying my - almost nonexistent - health. Under current UK laws, I am not disabled 'enough' to qualify for financial help.
     
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  10. Kina

    Kina

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    Is there any proof of this?
     
  11. Countrygirl

    Countrygirl I'm with Cheesus

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    I had assumed it was general knowledge, Kina.

    As for the D rating, when I was first told long ago, I had no idea what it meant but did find articles that explained the meaning of the classification.(Relying on memory)..............If a subject was classed in such a category, the media have to consult an official body to check the 'facts' before broadcasting or printing. In our case, it would mean that the story must not contradict the official 'take' on the origins, nature and treatment of the illness.

    http://www.sciencemediacentre.org/

    As you will know, if, say, the media consider printing a report on new paper that states that a biomarker that has been found in most ME patients, the paper must consult the SMC who then rally Drs Peter White, Sharpe, and various 'experts in mental health to give their expert opinion on the illness and the possible validity of the paper. White's vested interest in the PACE trial, of course, is not mentioned following his 'expert' opinion when he is asked to comment on research that challenges his publication. The potential report on the new paper is then dead in the water.

    Just imagine the impact if Voices had been broadcast! It is highly critical of the medical profession's 'treatment' of young people with ME and reports on the serious damage and distress it inflicts on both their lives and those of their families. There is no way that the SMC could allow the documentary to be shown if the name of the illness was made public.

    No doubt someone else can provide much more detail than I can.
     
  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    People would stop asking if I've tried vitamins, or if I drink enough water, or if I've tried exercise....etc.
     
  13. SOC

    SOC

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    If what I've heard from patients with other, but accepted, chronic illnesses like MS or diabetes, we may not be so lucky as to be free of medical know-it-alls. They seem to crawl out of the woodwork and become attracted to those who can't be instantly cured. :p Now if we could be cured of ME, we might have a hope of escaping those folks.

    [Strange mental images of the chronically ill trying to scramble away from a phalanx of know-it-all zombies holding out bottles of vitamin water and exercise pamphlets.]
     
  14. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    that is...just bonkers.

    @Countrygirl Do you have any idea where documentation of this policy / rating system might be found?
     
  15. Kina

    Kina

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    General knowledge? I have never heard before now that the film was not allowed to be shown because the makers refused to take out any references to ME. Where is proof of that? If it's general knowledge then why can't you provide any more details?

    I have seen ridiculous unscientific stuff related to health on TV in the UK which seems to point out that just about anything gets aired in the UK whether its approved by the SMC or not. Many small independent documentaries don't get air time on public networks just because the powers that run the networks don't think they are good enough or will attract a large enough audience. What would be the reason it has never aired in other countries? I think saying that there is "no way that the SMC could allow the documentary to by shown if the name of the illness was made public" is likely untrue and such statements should have some kind of proof because if this is true well ... ... ... !!!!!
     
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  16. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    If this were a recognized disease, health insurance would cover testing and treatment.
     
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  17. taniaaust1

    taniaaust1

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    If it was properly recognised

    - I'd be able to get the rebate in Electricity which is given to those who have illnesses which make them sensitive to temperatures (I cant currently get due to the name of my illnesses even though I end up in hospital when I get to hot)

    - I wouldn't feel fearful every time I have to go to hospital
    - I wouldn't feel fearful every time I see a new dr

    - I wouldn't feel fearful at what response I may get back if I answer people truthfully and tell them what is wrong with me.

    - I'd be getting my care needs met and not living in a dreadful state and my health would be better eg I wouldn't be getting asthma attacks from the dust in my house.

    - It would be easier for me to make friends for they'd understand better.
     
  18. digital dog

    digital dog Senior Member

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    Is there any way that one of us (Jonathan Edwards perhaps?) could write to someone (director, producer etc) with a whole stack of signatures asking for Voices to be aired?

    Does ANYONE on here know of an influential person that could organise this?

    It's such a high quality documentary that I just don't understand why it isn't being aired. Countrygirl perhaps you are right though and we're fighting a losing battle. Perhaps it is just too scathing of the medial profession.

    I wonder whether the mothers of Sophia and Lynn have petitioned to get it shown.

    :(:(:(
     
  19. Countrygirl

    Countrygirl I'm with Cheesus

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    Hello Kyla,

    I can direct you a discussion on how the SMC works as I briefly described above. I have just found it on PR and you were one of the posters.:)

    http://forums.phoenixrising.me/inde...-pushing-corporate-science.30393/#post-664720


    To briefly reiterate, when a journalist wants to write an article on a claimed scientific finding, they consult the SMC for the official story written by 'chosen experts' which in the case of a story on ME would be Prof White, Sharpe, Chalder and Wessely or any of their supporters. They do not choose people who would criticise the UK's official line. If you click on the link I gave you can see for yourself. You will also see where that the interpretation of the story that broke about the PACE trial recently came from. You can also check each breaking story year by year on the site, should you chose to do that.

    The information about how the D rating functions was easily accessible six years ago when I stumbled across it. Not so now it seems as I have just asked Dr Google. Curious!

    This was posted by Daisymay which some of you have read.



    I tried to read this, but I received the 404 message. Does anyone have a copy of it as it would give some more information about how the UK controls the official message on ME?

    Tom has fallen foul of them on the above thread which gives an insight into SCM's censorship role even when dealing with patients:

    Interestingly, a year later by using the Wayback Machine, Kyla found this:

    It will be fascinating to watch how the SMC respond in the unlikely of a journalist wanting to relate the story of the excellent letter written by the four scientists this week, challenging Dr Horton. They will they ask Prof White, as usual, to write the official story...............or will it be Wessely?


    I hope the above makes sense as I have to dash for an appointment now and don't have time to check.
     
  20. Valentijn

    Valentijn WE ARE KINA

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    MEActionUK is not a reputable source of information.

    If such an incident took place, I have no doubt that we would have heard about it from the creators of the film.
     
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