BurnA
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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.
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.
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