This essay is brought about by a story that keeps being mistold. As stories go, it is rather an old one. It is about a medical scandal and people with M.E. I say people, but the majority of those who have Myalgic Encephalomyelitis are women. Many of us were just girls when we became ill.
I am in awe, thank you for articulating so clearly how people, mainly women have been treated with such callousness by Dr's who swear to "do no harm".
Anyone reading this (imho it should be mandatory) can see the medical, political & media organisations have catagorically failed each & every single ME/CFS patient!
My heart aches for you & all chronically ill people, no one chooses to be ill, s/t we have no choice.
May 2020 I was DX'd with decompensated Cirrhosis & given 2 days to live. So thankful to the SNHS.
10 yrs previous to this I was DX'd with Adult ADHD, Fibromyalgia, kidney stones & Ulner nerve entrapment syndrome.
I was told (quite glibly) I had Non Alcoholic Fatty Liver Disease.
At the same time I was questioning the amount of fatigue, pain, weight gain, bone pain, joint pain I was experiencing.I turned to the Web, looked up my symptoms, luckily my GP's believed me, it took a Yr eventually I was DX'd with Hyperparathyoidism. After that I've had 2 TIA's, Acute Appendicitis, & DX'd with Diabetes T2 & given birth to approx 40 kidney stones, lost all of my teeth & I look like I'm pregnant with an elephant (Diastasis Recti) which cannot be fixed b/c of the cirrhosis.
Yes, back to the cirrhosis, even after 2+yrs I still can't process it, my sister kindly pointed out "one of the first things people are going to think is that you are an alcoholic", a couple of weeks ago my GP said the same. I don't drink! In my instance it it excess fat accumulating in the Liver (highly likely to be hereditary). I am angry! Only recently I was told that the NAFLD & the type 2 diabetes had accelerated the damage to the liver, it usually takes 30 odd yrs from NAFLD to cirrhosis, mine took 3 yrs!
WHY did no one mention this when I was first dx with NAFLD, my only cure is transplantation or death!
I feel I have to explain/give a reason or defend myself as to why I look very heavily pregnant (Acites) at 56!
Like yourself I do wonder every day if I will ever feel well enough to join society for any length of time again.
I so hope you can at least enjoy some good times.
Please take very good care of yourself, you deserve to have a good life, just like those who are lucky enough not to be *blessed*(sorry, my sense of humour, comes from having 2 sons with ADHD, S.I.D, Dyspraxia & ASD. Fighting to get their needs diagnosed took 10yrs & threats of losing them, that's another story to tell!)
Much love and gentle hugs 🤗
P.S I agree with you about Self I.D, There are going to be some really messed up young minds in the very near future.
On a very quick skim, a very thorough and comprehensive description of a medical condition I hadn't been aware of. Of course many people wind up with the short end of the stick in life's genetic lottery, but M.E. seems one of the worst outcomes.
Interesting though that the sufferers of those conditions are often the activists who are the impetus for changes for the better. Reminds me of having seen Lorenzo's Oil several decades ago:
"Lorenzo's Oil is a 1992 American drama film directed and co-written by George Miller. It is based on the true story of Augusto and Michaela Odone, parents who search for a cure for their son Lorenzo's adrenoleukodystrophy (ALD), leading to the development of Lorenzo's oil."
An excellent observational essay wrt the various ways in which people with ME have been discredited by those for whom such dishonour is beneficial. It's a shame a particular author who has used her pen to continue a defamatory narrative about people with ME (and related conditions) has not researched her characterisation as well as she might have done. I sincerely hope that 'said author' has the opportunity to read this essay and reconsider.
I am in awe, thank you for articulating so clearly how people, mainly women have been treated with such callousness by Dr's who swear to "do no harm".
Anyone reading this (imho it should be mandatory) can see the medical, political & media organisations have catagorically failed each & every single ME/CFS patient!
My heart aches for you & all chronically ill people, no one chooses to be ill, s/t we have no choice.
May 2020 I was DX'd with decompensated Cirrhosis & given 2 days to live. So thankful to the SNHS.
10 yrs previous to this I was DX'd with Adult ADHD, Fibromyalgia, kidney stones & Ulner nerve entrapment syndrome.
I was told (quite glibly) I had Non Alcoholic Fatty Liver Disease.
At the same time I was questioning the amount of fatigue, pain, weight gain, bone pain, joint pain I was experiencing.I turned to the Web, looked up my symptoms, luckily my GP's believed me, it took a Yr eventually I was DX'd with Hyperparathyoidism. After that I've had 2 TIA's, Acute Appendicitis, & DX'd with Diabetes T2 & given birth to approx 40 kidney stones, lost all of my teeth & I look like I'm pregnant with an elephant (Diastasis Recti) which cannot be fixed b/c of the cirrhosis.
Yes, back to the cirrhosis, even after 2+yrs I still can't process it, my sister kindly pointed out "one of the first things people are going to think is that you are an alcoholic", a couple of weeks ago my GP said the same. I don't drink! In my instance it it excess fat accumulating in the Liver (highly likely to be hereditary). I am angry! Only recently I was told that the NAFLD & the type 2 diabetes had accelerated the damage to the liver, it usually takes 30 odd yrs from NAFLD to cirrhosis, mine took 3 yrs!
WHY did no one mention this when I was first dx with NAFLD, my only cure is transplantation or death!
I feel I have to explain/give a reason or defend myself as to why I look very heavily pregnant (Acites) at 56!
Like yourself I do wonder every day if I will ever feel well enough to join society for any length of time again.
I so hope you can at least enjoy some good times.
Please take very good care of yourself, you deserve to have a good life, just like those who are lucky enough not to be *blessed*(sorry, my sense of humour, comes from having 2 sons with ADHD, S.I.D, Dyspraxia & ASD. Fighting to get their needs diagnosed took 10yrs & threats of losing them, that's another story to tell!)
Much love and gentle hugs 🤗
P.S I agree with you about Self I.D, There are going to be some really messed up young minds in the very near future.
All in the name of money!
On a very quick skim, a very thorough and comprehensive description of a medical condition I hadn't been aware of. Of course many people wind up with the short end of the stick in life's genetic lottery, but M.E. seems one of the worst outcomes.
Interesting though that the sufferers of those conditions are often the activists who are the impetus for changes for the better. Reminds me of having seen Lorenzo's Oil several decades ago:
"Lorenzo's Oil is a 1992 American drama film directed and co-written by George Miller. It is based on the true story of Augusto and Michaela Odone, parents who search for a cure for their son Lorenzo's adrenoleukodystrophy (ALD), leading to the development of Lorenzo's oil."
https://en.wikipedia.org/wiki/Lorenzo%27s_Oil
An excellent observational essay wrt the various ways in which people with ME have been discredited by those for whom such dishonour is beneficial. It's a shame a particular author who has used her pen to continue a defamatory narrative about people with ME (and related conditions) has not researched her characterisation as well as she might have done. I sincerely hope that 'said author' has the opportunity to read this essay and reconsider.