Deputy Kelleher, thank you for asking the question on behalf of all M.E. patients here in Ireland.
Minister Harris, thank you for your response. Unfortunately, it is neither an accurate nor a total response.
"I have been advised by the Medical Council that the main symptom of Myalgic Encephalomyelitis, that of long term overwhelming fatigue..." is incorrect.
As per 26 world-renowned M.E. experts (who compiled the ICC (International Consensus Criteria)), M.E. "is a complex disease involving profound dysregulation of the central nervous system (CNS) [1–3] and immune system [4–8], dysfunction of cellular energy metabolism and ion transport [9–11] and cardiovascular abnormalities [12–14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology."
The World Health Organisation lists M.E. under Neurology, G.93.3. It is not a fatiguing illness. Is it correct to state that Ireland signed up to the WHO? If so, isn't it incumbent on our Health Dept. to follow the WHO's ruling? As such, M.E. is a neurological illness.
"It is extremely likely ... that Myalgic Encephalomyelitis would be covered ..." is not a definitive answer. To my knowledge, M.E. is not taught in Medical Schools here, I have asked quite a number of doctors . In fact, one intern in a hospital told me he 'never heard of M.E. and would google it", which he proceeded to do.
Almost every doctor or specialist I have seen has never heard of M.E. So, that would negate your 'extremely likely' probability of its being covered, even with the caveat.
(Also "extremely likely" isn't really an answer. In fairness, Deputy Kelleher's question required a "Yes" or "No" response.)
I think your Medical Council has gotten the answer to Deputy Kelleher's question wrong (and/or is conflating M.E. with a 'chronic fatigue syndrome"). M.E. and CFS are not the same.
We held a demonstration outside Dáil Éireann on May 11th to highlight the neglect and, some weeks prior to that, all TDs and Ministers were sent an "Information Pack" and accurate links to correct M.E. information. Therefore, you all have all the correct and necessary information on M.E., which could be, at the very least, distributed to all GPs and specialists. It's only a matter of sending an email or a notification which would give them all the correct information and get them up to date. You could also supply them with the appropriate ICC guidelines and Primer for Medical Practitioners on how they can help us.
Of course, we also need treatment - which is also denied to us.
I would really appreciate if you could help M.E. patients in Ireland. We are left without knowledgeable doctors and left without treatment. 25% of us are housebound or bedridden with horrific symptoms. I can assure you that fatigue, whether overwhelming or not, is not even near our top most disabling symptoms.
There are many of us, including CHILDREN, living in hell because of M.E.. I have been writing to Ministers for Health for years and cannot get an accurate response and cannot also get the urgent help that we need.
As Minister for Health, I am again asking for your help.
Posted on 26 Oct 2017 11:12 pm
Deputy Kelleher, thank you for asking the question on behalf of all M.E. patients here in Ireland.
Minister Harris, thank you for your response. Unfortunately, it is neither an accurate nor a total response.
"I have been advised by the Medical Council that the main symptom of Myalgic Encephalomyelitis, that of long term overwhelming fatigue..." is incorrect.
As per 26 world-renowned M.E. experts (who compiled the ICC (International Consensus Criteria)), M.E. "is a complex disease involving profound dysregulation of the central nervous system (CNS) [1–3] and immune system [4–8], dysfunction of cellular energy metabolism and ion transport [9–11] and cardiovascular abnormalities [12–14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology."
Please see link here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011....
The World Health Organisation lists M.E. under Neurology, G.93.3. It is not a fatiguing illness. Is it correct to state that Ireland signed up to the WHO? If so, isn't it incumbent on our Health Dept. to follow the WHO's ruling? As such, M.E. is a neurological illness.
"It is extremely likely ... that Myalgic Encephalomyelitis would be covered ..." is not a definitive answer. To my knowledge, M.E. is not taught in Medical Schools here, I have asked quite a number of doctors . In fact, one intern in a hospital told me he 'never heard of M.E. and would google it", which he proceeded to do.
Almost every doctor or specialist I have seen has never heard of M.E. So, that would negate your 'extremely likely' probability of its being covered, even with the caveat.
(Also "extremely likely" isn't really an answer. In fairness, Deputy Kelleher's question required a "Yes" or "No" response.)
I think your Medical Council has gotten the answer to Deputy Kelleher's question wrong (and/or is conflating M.E. with a 'chronic fatigue syndrome"). M.E. and CFS are not the same.
We held a demonstration outside Dáil Éireann on May 11th to highlight the neglect and, some weeks prior to that, all TDs and Ministers were sent an "Information Pack" and accurate links to correct M.E. information. Therefore, you all have all the correct and necessary information on M.E., which could be, at the very least, distributed to all GPs and specialists. It's only a matter of sending an email or a notification which would give them all the correct information and get them up to date. You could also supply them with the appropriate ICC guidelines and Primer for Medical Practitioners on how they can help us.
Link to ICC Primer for GPs: http://sacfs.asn.au/download/me_international_consensus_prim...
Of course, we also need treatment - which is also denied to us.
I would really appreciate if you could help M.E. patients in Ireland. We are left without knowledgeable doctors and left without treatment. 25% of us are housebound or bedridden with horrific symptoms. I can assure you that fatigue, whether overwhelming or not, is not even near our top most disabling symptoms.
There are many of us, including CHILDREN, living in hell because of M.E.. I have been writing to Ministers for Health for years and cannot get an accurate response and cannot also get the urgent help that we need.
As Minister for Health, I am again asking for your help.