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Parliamentary debate on ME

Posted , 6 users are following.

Beverley_01
Beverley_01

Hi all great news!

We got the debate AND there was a unanimous vote:

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures”.

Thankyou all of you who signed the petition or who wrote to your MP. Together we are stronger.

Beverley

1 like, 11 replies

11 Replies

  • Noj_2804
    Noj_2804 Beverley_01

    Posted

    Hi Beverly, this is great news as I am still waiting for a proper diagnosis after a good few years. All my Doctor is prepared to say is that he thinks I have either ME or Fibromyalgia.

    • Beverley_01
      Beverley_01 Noj_2804

      Posted

      Hi there,

      It sounds like you aren't getting much support there re: diagnosis. You can ask to be referred by your GP to a specialist cfs/me clinic if you are in the UK. They can help or a rheumatologist I believe can help for fibromyalgia.

      Hope that is helpful

      Beverley

  • CFS.Sarah
    CFS.Sarah Beverley_01

    Posted

    It's great news isn't it.

    The first neurologist I saw told me I had ME/CFS and offered lots of support, unfortunately he left and the new neurologist doesn't believe it's real, he didn't actually say those words he gave that impression by saying it's a label given when they can't find anything wrong!

    A new GP at my practice is very much a believer and has been wonderful, offering support and a tissue when I had a little cry last week. 😀. He told me the NHS is funding research and they don't do that unless they feel it's worth it, so fingers crossed.

    Sarah

    • Beverley_01
      Beverley_01 CFS.Sarah

      Posted

      Hi Sarah,

      I am glad your new GP is understanding of the condition. My understanding GP has just retired and I have yet to see someone else!

      It is still hard to believe how many professionals don't seem to believe the condition or make false assumptions. A private psychiatrist wrote in a report that I had a 50/50 chance of getting cfs/me without the car crash because of my life style?!?! I was angry that this person held it was a psychological condition and the idea of seeing them was about PTSD but they put that I had car phobia and the cfs/me was 50/50? seeing as most people get it post virally and that as far as I have read, it can affect anyone, it seems a very odd and uninformed response.

      I hope extra research helps as well as more training for healthcare professionals.

      Beverley

    • jenny19687
      jenny19687 CFS.Sarah

      Posted

      But it is true thats the label they give when they don't know whats wrong. I don't think it necessarily means they don't believe but they don't know how to help. And yes easier to deny than admit that for some.

    • Beverley_01
      Beverley_01 jenny19687

      Posted

      hi Jenny,

      My own story doesn't support that idea. I was injured and suffered PTSD symptoms after a car crash. 18 months after this, by chance, someone I knew was referred to a cfs/me service. As I had the same symptoms bar the chest pain they had from post viral syndrome, I asked for a referral. At no point did any specialist I was seeing, my GP, physio, psychotherapist or anyone else say cfs/me. in fact I was told it would just take time to improve. I told them all how I had brain fog, slurred speech, pain, exhaustion etc etc. It was the cfs/me service that said it was classic cfs/me symptoms as a result of the crash. I can pinpoint how I was ok the day before the crash and have felt like I do now since it. think it depends on the healthcare professionals education and experience in cfs/me as to how they think and behave towards patients in their care.

      Hopefully funding is going to help to understand the condition as well as offer more understanding for those of us with it.

      Beverley

  • pet48859
    pet48859 Beverley_01

    Posted

    Hi Beverly,

    Yes the debate's outcome sounded very positive. Let’s hope they stick to their word & things are put in place sooner rather than later. It can’t come quick enough for us all! We all want to be well again. We all want to be able to return back to work & live a normal every day life. It’s a very distant memory, but this has given us hope that it will one day return to how it used to be 🙏🏻 can we see a glimmer of light at the end of a very long tunnel?

    • Beverley_01
      Beverley_01 pet48859

      Posted

      Definitely Petra,

      Funding and hopefully understanding of how we can help redress the balance once it has been tipped by cfs/me.

      Also, different campaign but, the whole millions missing campaign hopes to show-what were all missing. A couple of years ago I sent my walking shoes, that is what I'm missing-my long lovely walks. You sent shoes if you couldn't attend the demo in person with a message inside. Think it's a great idea because it showed we were missing by the very numbers of pairs of shoes !!

      We are still who we were but a diluted less functioning version and yes, I think we'd all like to be who we were before. But, I have learnt and been humbled by this d debilitating condition and of that I am grateful. I try to judge less, I ask for help more and I feel less guilty for doing that. I was fiercely independent before and its taking a heck of alot of adjustment. I think if I could kick the cfs/me, then I am becoming a better person just kind of trapped from being able to let that out!

      Beverley

    • pet48859
      pet48859 Beverley_01

      Posted

      I second that Beverly. I have mellowed somewhat in some ways. I’ve certainly slowed down which was obviously necessary. I used to run around like a blue arse fly no time to sit down, way too much to do. I still struggle with asking for help mind you - it goes against the grain as also fiercely independent. But yes I have read so many books in the time I have been ill and learnt so much. I feel I have grown in personal development and feel I have built a stronger foundation. So am also grateful for that. Looking forward to building the rest!

      And I agree the missing millions is a great campaign. Mine would be my gym shoes, as I really miss my working out & running. I defiantly wouldn’t be such a gym bunny this time around mind you!

      A very hard lesson but “we live and learn” and when we learn we live! 😃

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