The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Feeling upset at my local ME/CFS society

Discussion in 'General ME/CFS Discussion' started by taniaaust1, Aug 5, 2016.

  1. taniaaust1

    taniaaust1 Senior Member

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    Hi all, Im really disliking what my states ME/CFS society.. SA ME/CFS society is doing (which is generally a fairly good society, there are some really nice people there who do really try to help others with this) but it's helping push what I see as being false views over ME/CFS by republishing crap at thier website. http://sacfs.asn.au/ (top article there right now is a UK one "UK model beats her demons to become a model and fashion designer)

    "Ella ... fell ill last year with fibromyalgia and M.E. (chronic fatigue syndrome).

    'It was disabling and I was bedbound for a few months and really struggled to work,' she said. 'These illnesses are often caused by trauma.'

    She conquered her illness within six months by changing her lifestyle and adopting relaxation, meditation, arts and creativity. 'I suddenly became very creative and arty. It was then that I started sewing and designing clothes.'"


    It makes me really upset to see the ME/CFS society which I support as a member doing this as it will only lead to drs etc I may direct to this website, filling thier heads up with more false ideas on my ME, making this website a very poor advocacy site for me and one Im not going to be able to use. (It isnt the first time Ive seen articles along this line there).

    What hope is there for us when our own ME/CFS society are promoting this kind of stuff by republishing things like that? and that I have to join as a member such societies just in the hope they help push the seriousness of this illness to my local government (im feeling so dismal about it all right now).

    This kind of crap articles there is helping to sabortage those of us who need this illness to be seen as a serious one as its causing us serious issues which are not fixable by simple lifestyle changes. I wish I was well enough to start up a pure ME support group in my country and state to which I didnt have to read crap articles which play down the illness I have like this one.

    I worry about possibly dying as I cant get the help I need in Sth Australia (cant get to doctors or my specialists etc) why this (my) ME/cfs society, they play down things around the illness by publishing this. (I spent last night in hospital suicidal over my current situation with not being able to get the help I need with the ME and then read that.. that's not support for me).
     
    Last edited: Aug 5, 2016
  2. helen1

    helen1 Senior Member

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    That is very distressing Tania, I'd be angry too. More distressing is to hear that you're feeling so low. Are you back home now and did you get any help at the hospital?

    @taniaaust1
     
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  3. Skippa

    Skippa Anti-BS

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    Sounds like she had Fatigue Syndrome and didn't even qualify for the Chronic part yet. Grrr.
     
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  4. Chezboo

    Chezboo NOT MY BOARD

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    I couldn’t agree with you more Taniaaust1. It really is distressing to see that the very place we might expect accurate representation is in fact contributing to the gross misrepresentation of this very severe disease. The takeaway message from this article is at great odds with patient experience. Indeed the Danish research team who compared ME/CFS to 20 other serious conditions discovered that it in fact it had the worst health related quality of life of the lot. Worse even than various forms of cancer, chronic renal failure etc. This level of debility is surely not what you would expect could be ‘conquered’ within ‘6 months' by ‘adopting relaxation, meditation, arts and creativity'.

    With friends like this, who needs enemies.
     
    Last edited: Aug 6, 2016
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  5. Chezboo

    Chezboo NOT MY BOARD

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    I’m sorry Taniaaust1, I didn’t see your last paragraph when I wrote my comment. I hope the hospital took care of you and you are feeling a bit better. I worry of course with information such as the article that ME/CFS South Australian Society are disseminating will do nothing to help your situation and in fact perpetuates it. You and others are in great need with little support and this sort of information only harms us further.
     
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  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Just sent a quick email to: sacfs@sacfs.asn.au


    Hello ME/CFS Australia,

    As a Canadian with ME, I was shocked to see an article linked on your front page that promotes the idea that ME is a psychological condition.

    Publishing drivel only undermines biological research efforts to understand ME and is not part of the solution, but part of the problem.

    You have done a disservice to ME patients in Australia and globally.

    Scott
     
  7. DownUnder

    DownUnder

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    Dear taniaaust1,
    I am so sorry to hear of your situation and as a member of the management committee of the SA Society, I apologise for the added stress this article has caused.
    Thank you for bringing it to our attention. It is not an article that represents our views and it will be removed.
    As a fellow sufferer, I completely sympathise and I am working at improving our situation here in SA.
    I have also let our committee know.
    I also hope you have been able to get some care and that you are feeling a little better.
    Penny DF
     
  8. *GG*

    *GG* Senior Member

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    Good to hear, but how did this end up on your website in the 1st place? Anyone with a basic understanding of the illness would know its complete nonsense!

    If your illness resolves withint 6 months, it is not CFS, not by the criterion that was used to give me that name. The CCC is different? Does anyone know? What did the IOM report have to say about length of being ill? Not well versed on those documents.

    GG

    Edit: It is still on the website, how long will it take for this rubbish to be taken down?
     
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  9. Invisible Woman

    Invisible Woman Senior Member

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    It's still up there...

    I'm really sorry that you are feeling so low @taniaaust1 :hug:
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    Yeah, very disappointing publicising these crap Daily Mail articles :vomit::vomit::vomit::vomit::vomit::vomit::vomit::nervous:
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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  12. taniaaust1

    taniaaust1 Senior Member

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    I got a dr at the hospital who isnt good with ME and actually said something like "a young person shouldnt be in bed much, you should be doing more". She used my age against me as in what and what not I should be doing. Ive had that dr once before.. and then once again she tried playing down my MCS issues by trying to get me to go home on a taxi (offering to pay for it) which I refused it as it was nothing about money.

    I ended up in bad situation again with no safe way to get home with them trying to discharge me at 11.30pm (in the end someone higher up there said I could sleep there the rest of the night. (I was left feeling quite distressed till they said I could do this and get someone to pick me up in morning..worried I could forcefully be put onto the street).

    Ive then used my limited clearing support time for this week to get a carer (a chemical free one in a chemical free car of course) to pick me up and take me home in the morning (this means my dishes may get left for 2 weeks), my contact doesnt allow me to use any of my support time after 8pm.

    I was hoping that one of the obviously more aware to ME drs (there is only one or two there) who have previously phoned the state disability service would be there as last time one of them phone them, the disability service lied to the dr and said they would give me more help..

    which they then didnt end up doing and just said to me that the dr had spoken to someone there who wasnt authorised to give me more help so the hospital dr was told the wrong thing and was left thinking I'd be getting more help. (but instead i ended up not getting more and now getting bullied by a new support agency coordinator over not being able to do enough)
     
    Last edited: Aug 7, 2016
  13. taniaaust1

    taniaaust1 Senior Member

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    thank you.
     
  14. taniaaust1

    taniaaust1 Senior Member

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    thank you Penny, it did upset me lots esp since Ive just been released from hospital due to feeling suicidal over the poor treatment I receive around this illness and abuse Im currently copping from people for having this as I just cant get well by the methods that article expressed.

    I much appreciate it.

    No proper care to be found here as too much who should be helping us carry this misconception that healthy lifestyle or whatever can cure this. Dr who was on at Noarlunga hospital just said that a young person my age shouldnt be in bed so much and agreed with the other abusive one that I should be doing more household duties. No regards to that doing more makes me sicker.

    I cant even get an answer from our health minister (ive been sending letters since Jan or Feb) requesting which support services are catering to severe ME patients.. I've now had my local MP trying to get an answer for me for past few months. (my past doctor kept refering me to the state disability service who say they dont help ME people and say it is against their policy to do so).
     
    Last edited: Aug 7, 2016
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  15. taniaaust1

    taniaaust1 Senior Member

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    It has been taken down now.

    I think what they do is they tried to collect all ME/CFS articles and put them up there no matter what their standard is.

    The SA ME/CFS society does also support the CCC. For a CCC diagnoses you do need to be sick for 6mths before qualifying under that diagnostic criteria http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

    Ive no idea about the IOM.
     
  16. DownUnder

    DownUnder

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    @taniaaust1 As a fellow sufferer I am sorry you've had this experience recently and only too aware of the issues we face here.
    At our next seminar August 27th 1:30 pm Dr Bruce Wauchope will be talking on the proposed ME/CFS Clinic and the stepped, problem solving approach to their treatment protocol. I don't know if you're well enough to attend but It would be good to meet you ( if my health allows too.) I'm not usually on this site but more the local FB pages.
    We have some good research happening in Adelaide, some good collaboration too. Also meetings with politicians. Hang in there. Things are changing even though it's painfully slow.
     
  17. DownUnder

    DownUnder

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  18. Invisible Woman

    Invisible Woman Senior Member

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    There was no criticism intended @DownUnder . I simply pointed out that at the time of posting the article was still there (as indeed had others). The gist of my post was actually to send a little support to taniaaust1.
     
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  19. OhShoot

    OhShoot

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    My ex-GP once said to me in this coaxing tone, "It's not normal for a healthy, active young person to be laying in bed all day, wouldn't you agree?"

    You'd think she would think for a minute and realize that wait, no, it's *not* normal--she's sick! :eek:

    It continues to astound me that this "if you would just act like a healthy person, it would solve all your problems!" thing comes out of the mouth of doctors...

    It's like, are you actually a doctor, or not...? Cause I'm confused!!

    :hug:
     
  20. taniaaust1

    taniaaust1 Senior Member

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    thank you for the post

    nods yeah, we are lucky at least to have some good studies which go on in Adelaide. Ive been a participant in some of the ME/CFS studies over here (the brain ones over 7 years and the carnitine one)

    I wonder if Dr Bruce Wauchope would take a phone call from me and if he could help me in my situation.. Im in so much trouble due to the ME/CFS and my inability to keep up with my life things and have no drs support

    (Im currently thinking about actually putting myself into jail again cause I cant cope at home with the ME, that's been one of my past coping strageties as there is not enough help available elsewhere and my home gets so terrible at times that I prefer jail where its clean and without the pressures being put on me at home. Situation is so bad that Im using jail as a time out to get away from my home situation, Ive done that twice now.

    I wouldnt have never been there if it wasnt for the ME so now that is basically making me look like a criminal as Im unable to cope at home.

    I dont even now have a dr as I cant get to them being housebound and cant get to my ME/CFS specialists. National Home dr service doesnt act like a persons normal GP and just tell me I need to some how get one, they cant advocate for people or do a lot of things.

    I'd love to attend this meeting if I had a way to get there. Is anyone going from seaford way? (I dont use FB or emails as its all too much for me to keep up with). If I can get a ride with someone else going there I need to be able to take my wheelchair and may need pushing when leaving the group as may not be able to walk safely and I cant push myself.
    ....

    What politicians have the SA ME/CFS society been in contact with who are trying to help? Maybe I should contact those too? Ive been trying to get more help and answers on ME/CFS services throu the MP Chris Picton's office who's written to our states disability service several times for me (but I still havent been able to find out where my past dr was supposed to refer me to for help seeing state disability service doesnt help us). im going to try to chase that up again today but I suppose there has been no progress as I havent got another letter yet.
     
    Last edited: Aug 7, 2016

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