Thank you for your advocacy in behalf of ME patients. I am an RN who had to discover my own diagnosis after getting the worst flu of my life on 12/24/09 & descending into a living hell! Not a single doctor, nor I myself knew what was wrong with me for 2 years! So I spent the time I was cognitively & physically able to, researching my symptoms until I discovered the Nightingale foundation’s website! It was there that I discovered a textbook description of the multitude of symptoms I was experiencing & a diagnosis of ME & POTS! Before that I thought I was the only person in the world experiencing this mystery disease- that I had to be dying from, though not a single specialist, could find anything wrong with me!!
Thank God After being confined to lying flat for over a year, I learned about POTS! At my next appointment, I had the nurse check my orthostatic vital signs & my physician ran an infusion of normal saline into me right there in her office after I told her her about POTS! We watched my vital signs (High heart rate & BP) normalize Immediately afterwards! I started receiving infusions three times weekly, which took me from being forced to live flat in bed to being able to sit in a recliner & tolerate walking to the bathroom! I still receive them to this day, 12 years later, but have had to live through 3 different bouts of sepsis from Porta cath infections!
Thank you for the feedback! The Nightingale Foundation has offered a lot of good information over the years. I have gained a lot from them and have some of their books on hand to refer to as needed.
It's great that you've had access to IV fluids that often but sorry to hear about the sepsis issues. Looking forward to when we have better tools to manage ME.
Thank you for this, Colleen. I’m not sure how, but I didn’t learn about Maeve until reading your post just now. I’m not sure where in the world you’re located, but I know that ME Action here in the U.S. recently worked with the Mayo Clinic to create training and resources for medical professionals anywhere, since none seem to learn about our illnesses in graduate school.
Maeve's story is heartbreaking. Sadly, it isn't an isolated case but the fact that it has gone to an inquest is important.
I am in Illinois (US). For Maeve in the UK the NICE guidelines are something that should be used, however it is far from adequate for ME and especially inadequate for Severe ME.
I am familiar with the Mayo Clinic information. As far as I have seen it uses a similar criteria as the NICE guidelines. (NICE is based on the IOM criteria - what's on the CDC website).
These guidelines leave out much of what I think is vital for thorough screening to verify an ME diagnosis that includes neurological, immunological and cardiac issues we deal with. I would like to see doctors educated on how to stratify those who have ME as per the International Consensus Criteria and those who may have been misdiagnosed or had a missed diagnosis that is treatable.
We are still seeing far too many given an ME/CFS diagnosis who find out later they have something that is treatable.
I am sure Maeve was accurately diagnosed with ME. It underscores how important it is to get a proper diagnosis and then get proper care. Her death was preventable if NHS had followed expert guidance to begin with.
Thank you for your advocacy in behalf of ME patients. I am an RN who had to discover my own diagnosis after getting the worst flu of my life on 12/24/09 & descending into a living hell! Not a single doctor, nor I myself knew what was wrong with me for 2 years! So I spent the time I was cognitively & physically able to, researching my symptoms until I discovered the Nightingale foundation’s website! It was there that I discovered a textbook description of the multitude of symptoms I was experiencing & a diagnosis of ME & POTS! Before that I thought I was the only person in the world experiencing this mystery disease- that I had to be dying from, though not a single specialist, could find anything wrong with me!!
Thank God After being confined to lying flat for over a year, I learned about POTS! At my next appointment, I had the nurse check my orthostatic vital signs & my physician ran an infusion of normal saline into me right there in her office after I told her her about POTS! We watched my vital signs (High heart rate & BP) normalize Immediately afterwards! I started receiving infusions three times weekly, which took me from being forced to live flat in bed to being able to sit in a recliner & tolerate walking to the bathroom! I still receive them to this day, 12 years later, but have had to live through 3 different bouts of sepsis from Porta cath infections!
Thank you for the feedback! The Nightingale Foundation has offered a lot of good information over the years. I have gained a lot from them and have some of their books on hand to refer to as needed.
It's great that you've had access to IV fluids that often but sorry to hear about the sepsis issues. Looking forward to when we have better tools to manage ME.
Thank you for this, Colleen. I’m not sure how, but I didn’t learn about Maeve until reading your post just now. I’m not sure where in the world you’re located, but I know that ME Action here in the U.S. recently worked with the Mayo Clinic to create training and resources for medical professionals anywhere, since none seem to learn about our illnesses in graduate school.
Thanks for your feedback Amy.
Maeve's story is heartbreaking. Sadly, it isn't an isolated case but the fact that it has gone to an inquest is important.
I am in Illinois (US). For Maeve in the UK the NICE guidelines are something that should be used, however it is far from adequate for ME and especially inadequate for Severe ME.
I am familiar with the Mayo Clinic information. As far as I have seen it uses a similar criteria as the NICE guidelines. (NICE is based on the IOM criteria - what's on the CDC website).
These guidelines leave out much of what I think is vital for thorough screening to verify an ME diagnosis that includes neurological, immunological and cardiac issues we deal with. I would like to see doctors educated on how to stratify those who have ME as per the International Consensus Criteria and those who may have been misdiagnosed or had a missed diagnosis that is treatable.
We are still seeing far too many given an ME/CFS diagnosis who find out later they have something that is treatable.
I am sure Maeve was accurately diagnosed with ME. It underscores how important it is to get a proper diagnosis and then get proper care. Her death was preventable if NHS had followed expert guidance to begin with.
Thank-you Colleen.