Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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My meeting with The Minister for Health, Simon Harris, TD

Discussion in 'Action Alerts and Advocacy' started by BurnA, Nov 12, 2016.

  1. BurnA

    BurnA Senior Member

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    Today I met the Minister for Health of Ireland, Simon Harris.
    It was just me and Simon for about 15 minutes, in his constituency office.

    He knew about the existence of ME but I don't think he was aware of the state of affairs in terms of lack of treatments or research.

    I highlighted the Irish health service executive ( HSE ) website which lists CBT and GET as treatments for ME. He seemed surprised at this and said he would look into it. I gave him a very very brief explation into the background to these 'treatments' and he admitted in a lot of cases the Irish authorities copy what the UK are doing. I mentioned the 'fear of exercise' theory and he rolled his eyes to heaven.

    He asked what country is doing ME well, to which I couldn't think of any, but the fact he asked means he probably wanted to use them as a case study or comparisson. I did say that the UK are the last country to copy, to which he laughed. In hindsight I could have mentioned the Norwegian minister of healths statement and their funding of Fluge and Mella, as an example of a country taking the rights steps, but it's hard to think of everything on the spot.

    I gave him a few pages from the IOM report summary, the ME page from NORD website, the letter to the Lancet from Virology blog, the PACE trial reanalysis by Matthees and Kindlon, and the downgrading of CBT and GET from the AHRQ. I don't know how much he will read but he did seem interested and he did say he would get people to look into it.

    I pointed out there was no ME medical consultant in Ireland and he was again surprised and curious why not. I explained the scepticism of the medical community in general and the lack of knowledge about the disease.
    I told him all my medical results were normal and that this was a problem for diagnosis.

    I showed him some slides from Komaroffs recent Solve webinar showing the cost to the US economy and translated those figures into the Irish equivalent. Again he was surprised and interested. He asked about prevalence and expressed concern that there could be about 10,000 Irish citizens whose needs are not being met.

    I asked him to mention ME to doctors in passing, over the course of the next few months and see what response he gets, to which he said he would do this and report back to me honestly.

    He asked about research and I pointed out the lack of funding compared to other diseases like MS. I explained the absence of a biomarker and the issue researchers have with getting funding especially for hypothesis based research. I did mention the ongoing rituximab trial in Norway.

    All in all I would say he didn't know a lot but he seemed interested to know more. Unfortunately I couldn't pin him down in terms of an action or deliverable, apart from him saying he "will look into it ", but from my perspective I am hopeful he will ask the right questions now within his department. For me this was hopefully just the first step of a long term productive process. I will follow up with him in a few months if I don't hear anything back in the meantime.
     
    Last edited: Nov 12, 2016
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  2. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Sounds like you did a great job getting the main points across. And the UK is certainly the last place to emulate on this issue. I hope the meeting is the beginning of a change in policy in Ireland. Politicians certainly need to be appraised of the situation, especially from the point of view of patients, and international research. Well done!
     
  3. alex3619

    alex3619 Senior Member

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    Much of the misunderstanding and inaction regarding ME comes from lack of knowledge and awareness. Its always good to change this for the better, even if it has no immediate results.
     
  4. Comet

    Comet I'm Not Imaginary

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    So proud of you. Well done! :star:
     
  5. Sing

    Sing Senior Member

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    I applaud you for your courage and effort in taking the dilemma of people with ME to the top official in your country. Sometimes the people at the top are more amenable to change than those lower down (The film entitled, "Room at the Top", had a great point). I have thought of trying to find out who the top person would be at the big local university hospital in my area, and also trying to meet with him/her. With a slow, disorganized brain, however, I know how much effort it would be to try to organize a presentation. I am glad to hear of your choice of subjects and information. If I spent a week preparing, I could do it if allowed sufficient time in the conversation, but then I can't think on my feet, so questions could leave me at a loss.The reality and state of ME is hard to summarize without a clear and able mind, but if I had that, I would not have ME.

    I live in the NE part of the U.S and despite all the educated people and universities, there is not one single doctor who is really knowledgable in ME, apart from a few who practice in New York City. There is no way I could handle travelling to New York, and those doctors, while knowledgable, do not have effective treatments to offer anyway. Of course, there are unlimited numbers of Alternative Health Practitioners everywhere who claim to be able to successfully treat ME, and none of them can. Been there and done that, along with the rest of us. So, if and when I get my courage up, I too may try to meet with someone at the top of the university hospital here to point out their lack of a single physician knowledgable in the diagnosis and treatment of ME.
     
    Last edited: Nov 12, 2016
  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  7. KME

    KME

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    Great job, @BurnA. Well done in particular on giving him such good sources of information - I think this is key. I'm Irish too. I slip key articles to my GP every once in a while. During a recent hospital visit I managed to press the International Consensus Primer on a few unsuspecting health professionals! I find in Ireland we have more ignorance than misinformation, so education actually has a chance of being effective. If effective treatments emerge in the next 5-10 years I think we will have a good chance of arguing for access, and the kind of relationship you're forging will be important. Thanks for using your energy for this.
     
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  8. Sidereal

    Sidereal Senior Member

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    @BurnA, well done, great advocacy.

    Having worked in the HSE I can confirm that they tend to just follow whatever the NICE guidelines say.
     
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  9. char47

    char47 Senior Member

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    @BurnA brilliant WELL DONE! :):thumbsup::star:
     
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  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    Good to hear. It's nice to hear of a meeting where the person seemed engaged and receptive to reality.
     
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  11. Gemini

    Gemini Senior Member

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    Outstanding, @BurnA ! :thumbsup::thumbsup::balloons:
     
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  12. KME

    KME

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    Yep, similarly I worked in one of the large teaching hospitals (a good few of which are non-HSE) and NICE guidelines are also given high regard, but not considered binding, and clinicians are also open to what's happening in the States and Australia in particular. If treatment guidelines changed in the US or Australia or...Norway...we'd be in a strong position to argue for change. We really, really need breakthroughs in pathophysiology and treatment - the current research momentum bodes well.
     
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  13. Sidereal

    Sidereal Senior Member

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    The most realistic prospect of change in the near future seems to be the US. I wouldn't hold my breath re: the NICE guidelines improving anytime soon.
     
  14. Sing

    Sing Senior Member

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    Reality is a hard sell!
     
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  15. AndyPandy

    AndyPandy Making the most of it

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  16. leela

    leela Slow But Hopeful

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    Thank you @BurnA! Brilliant job--a service to patients and practitioners alike. W00t!
     
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  17. JoanDublin

    JoanDublin Senior Member

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    Great to see so many people from Ireland here! I'm from Dublin (the name might have been a give away)

    Well done @BurnA . It's always good to get the ears of the pols.

    Last year I met with Kathleen Lynch, Junior Minister, along with Declan Carroll from IMET and we raised the issues of the NICE guidelines, PACE and also the lack of education about ME. She handed over the info to an Aine Carroll, a civil servant. Of course we have a new Govt and nothing came of it but Aine Carroll still is a pivotal player apparently in all this. A friend of mine, a severe patient from Mullingar, has recently had correspondence about the dangerous information on the HSE website regarding ME and has had some interest. She was also referred to Aine Carroll. She also has two local TDs raising the issue. Maybe the time is coming closer to having some success with changing those guidelines on the HSE website? I'd be happy to correspond with you to further this aim. I reckon we have a better chance when the PACE reanalysis gets published in a medical journal (ref @Tom Kindlon)
     
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  18. FredaF

    FredaF

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    Wonderful job. Actually the Canadian Consensus Criteria and the International Consensus Criteria- list a number of physiological and biological abnormalities that show up....chances are that you may have measurable, quantifiable orthostatic intolerance, tachycardia, low body temp....a CPET test (2 day if necesary) would show you physical functional capacity. Lactate acid increase after exercise. Abnormalities in Rhomberg test...
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    I think this is one of our best points of attack at this point of time with things as there is enough info out there now which points to that we shouldnt be being treated as we have been. I hope more people start taking our issues to their health ministers to make sure they are aware there is issues. (things will never change without awareness).

    I believe the ME community hasnt worked hard enough with our governments except in UK where they have tried very hard and America I think some there are giving it a good go and really trying (but probably not pushed hard enough).

    Many years ago I was pushing the CDC in America from Australia and it appeared they werent used to this or the questions I was asking from them at all (and I think it is interesting that an Aussie with ME got the PACE trial data from the UK). The CDC

    ended up telling me they wanted to talk to me about ME on the phone but I was too sick to continue on so never did (at that point I was picking them up on conflicting things on their website and found they couldnt provide answers to why they had info conflicts there. They'd sent me on a wide goose chase to get my question answered about why they had what they did as they didnt even understand why they had what there.

    Back then they clearly said there that ME and CFS were different illnesses in 3 different places on their website (this years later was removed and then it was just there in 1 place but not commonly read place so most didnt notice, Ive no idea what is on their website now).

    So I was trying to get from them what the differences were and asking why that wasnt explained more on website. Im sure I was the only ME advocate to have been doing this at the time as they seemed dumbstruck and confused at my questions and werent even aware of what was on their own site (at the time other advocates I spoke too had no interest in pushing from that point and were trying to battle things on lower levels, it was years later when people started pushing things higher).

    So yeah, we've as a community not put enough advocacy into the high levels where its needed.

    Great going with your meeting with your health minister.

    Ive been in communciations now for a while (since early Feb this year) with my health minister. Im just trying to get basic answers for care for ME/CFS in Sth Australia but so far he's just passed my letters on to others which gave me vague responses still not answering question though and I havent been able to get a straight answer to my question of care services for us. I will keep trying to I find out the answers and it does appear at this point that my health minister needs to be far more educated in the issue.

    My local ME/CFS society is also trying hard right now to get changes at government level as we've even been left out of the new disability support system being introduced in Australia. So im happy knowing Im not being left alone to try to sort out things at our government level.

    It would be great if everyone makes sure that at least their local member of parliaments know about the ME situation and the mess things around this are in.... lets give no one up at the high levels an excuse of not knowing about our plight.
     
    Last edited: Nov 12, 2016
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  20. Barry53

    Barry53 Senior Member

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    Really well done for this @BurnA.
    That really would have been too much to hope for :)
     
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