Such courage to speak your truth. I first came across ME in the early days of a colleague’s ?diagnosis 30+ years ago following her twice prescribed antibiotic doses for flu type lingering illness. After many months she returned to work on a limited part-time basis. I could see she was reserved in engaging with colleagues so chose to accept that her hours spent at our NHS admin roles was part of her recovery plan and not question her health. She gave up work after a few more months and I assumed that was her choice so I was pleased for her. I moved out of the area myself so thought little of my time there.
My next more direct ME contact was with a younger distant friend when I moved closer to her area and decided to catch up with her 7yrs ago ..pre pandemic. We met for lunch close to me as I hoped to show her my newish home. She spoke of how her ME had resulted in leaving her much loved important work and moving area to manage independence for herself while supporting family members. I was so intent on welcoming her to my home that I persuaded her to walk the 200+yds to mine. After a quick view we walked back to her car parked in the disability zone where we said our goodbyes as she said she would sit there for a while before driving home. I had no real connection to the changes ME had enforced on her until I went to her home a few weeks later and saw the sanctuary she had had to make for herself to manage the worst days.
I caught Covid early March 2020 just before isolation date when I thought it best to make a train trip while I could. I have had long Covid since with all it’s ME type symptoms. My shame in not connecting with those genuine ME sufferers before I truly understood them through my own experience, will continue to sit heavily within my own dark moments. Being in my 70’s means I have more memories of my normal previous self than not whilst acceptance of myself today is a work in progress.
I sincerely apologise for not connecting to the reality of ME until I knew.
Sometimes that’s what it takes … just to consider the truth of others more profoundly.
Reading this brave, courageous and oh so well-informed account brought back that familiar feeling of absolute rage about the appalling behaviour of clinicians towards those of us with #ME.
I find myself asking - ‘How dare they?’
How a trained professional can live in ignorance and act on prejudice rather than read some books, scan some science papers or even read The Times reports about the death of Maeve Boothby O’Neil and then not resist the BPS model of #ME, is beyond me. I ask again, ‘How dare they?’
After nearly 40years of #ME the tide is finally turning, the science is there, and I’m done with politeness. When a clinician dares to define my illness as psychological I respond “if you want to remain in medicine and not become a victim of a class-action lawsuit by people with #ME then you’d better start reading and you can start with the NICE guidelines NG206”
Because if they can dare to be cruel I can dare to be sane. And, what’s more we can now ALL dare to be right.
My brain isn't working well enough to form a reply as appreciative as I am for this post and for ThereForME providing a place for people to tell their stories. Thank you, author of this piece, becase it is so similar to my own ME story and no less shocking to read how badly we're all being failed.
I have to take my OH with me to all my medical appointments. I’ve been gaslit so many times. One nurse in A&E said “just don’t speak to me about NICE!” A specialist in menopause tried to tell me that CBT was worse than useless and that NLP was the way forward and she’d “just completed a doctorate in the subject” I just wanted a dosage increase but it actually turned out the problem was the unmonitored heart medication I’d been put on with no warning of side effects for the dysautonomia from my ME/CFS (which we wouldn’t find out for another 6 months whilst I became bedridden.) We came out of that particular one and my OH was aghast “she just steam-rollered you! She didn’t even listen!” “Welcome to my world…” was all I could say in response.
Wow - this says so much of what l might have written as someone who has worked in NHS research and as a Mum of a #pwME. l am so sad to be reading more and more brave accounts of life with ME/CFS that so closely mirror my daughter’s experiences.
I too am so deeply disappointed with the NHS & l can’t reiterate strongly enough how much ME/CFS needs a clinical home.
Unable to keep up with the constant pressure, my lovely GP took early retirement last year around the time of the #MaeveInquest- her last words to me were “I should have known you weren’t making it up”.
That single sentence told me everything about the leadership at the surgery and it remains as chilling to me today as it was when she said it. If she’d said ‘don’t trust the doctors here’ I couldn’t have understood her more clearly.
A not-dissimilar story to mine... It is shameful that successive governments and the NHS have historically ignored or, perhaps worse, dismissed such a chronically disabling disease that is myalgic encephalomyelitis. Even now, people M.E. have to fight (if they have the energy to do so, of course) every day for basic recognition, let alone 'treatment'!
I haven't had a 'good' or fully functioning day in decades now — despite trying my very hardest to get to that state. I've also seen a worsening in symptoms not just day to day, but year on. I have recently been referred to the cardiology team for suspect angina, following a particularly scary and unprecedented episode the other week that should have landed me in A&E, but #pwME all know why they do everything they can to avoid going there. Oh, the irony.
The bit about a lack of PIs really hits the nail on the head. That lack of interest in the past has meant appropriate non psych research has been few and far between with a knock on effect to today. Young researchers go where the funding pots are so without many experienced researchers out there it's hardee to get going. I love the bluntness of this piece calling out the failures👌
Yet another powerful piece that has shocked me with its evidence of repeated NHS negligence, despite becoming increasingly aware of this issue since developing Long COVID myself. I'm British/Irish but have lived fir some years now in the NL. It's certainly encouraging to see Rob Wüst's research but I can also confirm that treatment plans here for those with Long COVID are, as in the UK, extremely disappointing. I don't think I've been so repeatedly or unfeeling gaslit, but my GP certainly sought to emphasise the role of anxiety and my overall mental health in my case. A psychogist's support has been hpful but certainly not curative and I have been offered very few pharmacological options for symptoms management. The experience has definitely made me wary of clinicians in a way that I was not before. I'm so grateful to those at There for ME and contributors like today's author whose research highlights promising developments as well as the deeply systemic nature of the failings in recognising and treating ME and related conditions.
Is there anything that can be done about the misuse of NICE guidelines to refuse referrals or treatments? This story is too familiar. Wish there were someone to talk to.
Such awful treatment but sadly so common and it still happens all the time. Yesterday i had an appointment at surgery as I was asked to come in because of results of blood tests. The young locum first asked why I was there? Genuine confusion on my part at this and then he said you iron results are only a little low you will be fine. I nodded and not until I was home did I remember I should have explained I have been on high dose iron months so it shouldn’t be low. Somehow he then began to talk about FND as the cause of all my symptoms and printed out exercises to help with FND dizziness and suggested I find answers in a website. I give up. It’s been so long dealing with drs who dismiss, minimise and patronise. Why should anyone with ME still have to deal with this?
Such courage to speak your truth. I first came across ME in the early days of a colleague’s ?diagnosis 30+ years ago following her twice prescribed antibiotic doses for flu type lingering illness. After many months she returned to work on a limited part-time basis. I could see she was reserved in engaging with colleagues so chose to accept that her hours spent at our NHS admin roles was part of her recovery plan and not question her health. She gave up work after a few more months and I assumed that was her choice so I was pleased for her. I moved out of the area myself so thought little of my time there.
My next more direct ME contact was with a younger distant friend when I moved closer to her area and decided to catch up with her 7yrs ago ..pre pandemic. We met for lunch close to me as I hoped to show her my newish home. She spoke of how her ME had resulted in leaving her much loved important work and moving area to manage independence for herself while supporting family members. I was so intent on welcoming her to my home that I persuaded her to walk the 200+yds to mine. After a quick view we walked back to her car parked in the disability zone where we said our goodbyes as she said she would sit there for a while before driving home. I had no real connection to the changes ME had enforced on her until I went to her home a few weeks later and saw the sanctuary she had had to make for herself to manage the worst days.
I caught Covid early March 2020 just before isolation date when I thought it best to make a train trip while I could. I have had long Covid since with all it’s ME type symptoms. My shame in not connecting with those genuine ME sufferers before I truly understood them through my own experience, will continue to sit heavily within my own dark moments. Being in my 70’s means I have more memories of my normal previous self than not whilst acceptance of myself today is a work in progress.
I sincerely apologise for not connecting to the reality of ME until I knew.
Sometimes that’s what it takes … just to consider the truth of others more profoundly.
Reading this brave, courageous and oh so well-informed account brought back that familiar feeling of absolute rage about the appalling behaviour of clinicians towards those of us with #ME.
I find myself asking - ‘How dare they?’
How a trained professional can live in ignorance and act on prejudice rather than read some books, scan some science papers or even read The Times reports about the death of Maeve Boothby O’Neil and then not resist the BPS model of #ME, is beyond me. I ask again, ‘How dare they?’
After nearly 40years of #ME the tide is finally turning, the science is there, and I’m done with politeness. When a clinician dares to define my illness as psychological I respond “if you want to remain in medicine and not become a victim of a class-action lawsuit by people with #ME then you’d better start reading and you can start with the NICE guidelines NG206”
Because if they can dare to be cruel I can dare to be sane. And, what’s more we can now ALL dare to be right.
My brain isn't working well enough to form a reply as appreciative as I am for this post and for ThereForME providing a place for people to tell their stories. Thank you, author of this piece, becase it is so similar to my own ME story and no less shocking to read how badly we're all being failed.
I have to take my OH with me to all my medical appointments. I’ve been gaslit so many times. One nurse in A&E said “just don’t speak to me about NICE!” A specialist in menopause tried to tell me that CBT was worse than useless and that NLP was the way forward and she’d “just completed a doctorate in the subject” I just wanted a dosage increase but it actually turned out the problem was the unmonitored heart medication I’d been put on with no warning of side effects for the dysautonomia from my ME/CFS (which we wouldn’t find out for another 6 months whilst I became bedridden.) We came out of that particular one and my OH was aghast “she just steam-rollered you! She didn’t even listen!” “Welcome to my world…” was all I could say in response.
Wow - this says so much of what l might have written as someone who has worked in NHS research and as a Mum of a #pwME. l am so sad to be reading more and more brave accounts of life with ME/CFS that so closely mirror my daughter’s experiences.
I too am so deeply disappointed with the NHS & l can’t reiterate strongly enough how much ME/CFS needs a clinical home.
If only!
Unable to keep up with the constant pressure, my lovely GP took early retirement last year around the time of the #MaeveInquest- her last words to me were “I should have known you weren’t making it up”.
That single sentence told me everything about the leadership at the surgery and it remains as chilling to me today as it was when she said it. If she’d said ‘don’t trust the doctors here’ I couldn’t have understood her more clearly.
To be believed? If only!
A not-dissimilar story to mine... It is shameful that successive governments and the NHS have historically ignored or, perhaps worse, dismissed such a chronically disabling disease that is myalgic encephalomyelitis. Even now, people M.E. have to fight (if they have the energy to do so, of course) every day for basic recognition, let alone 'treatment'!
I haven't had a 'good' or fully functioning day in decades now — despite trying my very hardest to get to that state. I've also seen a worsening in symptoms not just day to day, but year on. I have recently been referred to the cardiology team for suspect angina, following a particularly scary and unprecedented episode the other week that should have landed me in A&E, but #pwME all know why they do everything they can to avoid going there. Oh, the irony.
The bit about a lack of PIs really hits the nail on the head. That lack of interest in the past has meant appropriate non psych research has been few and far between with a knock on effect to today. Young researchers go where the funding pots are so without many experienced researchers out there it's hardee to get going. I love the bluntness of this piece calling out the failures👌
Yet another powerful piece that has shocked me with its evidence of repeated NHS negligence, despite becoming increasingly aware of this issue since developing Long COVID myself. I'm British/Irish but have lived fir some years now in the NL. It's certainly encouraging to see Rob Wüst's research but I can also confirm that treatment plans here for those with Long COVID are, as in the UK, extremely disappointing. I don't think I've been so repeatedly or unfeeling gaslit, but my GP certainly sought to emphasise the role of anxiety and my overall mental health in my case. A psychogist's support has been hpful but certainly not curative and I have been offered very few pharmacological options for symptoms management. The experience has definitely made me wary of clinicians in a way that I was not before. I'm so grateful to those at There for ME and contributors like today's author whose research highlights promising developments as well as the deeply systemic nature of the failings in recognising and treating ME and related conditions.
Is there anything that can be done about the misuse of NICE guidelines to refuse referrals or treatments? This story is too familiar. Wish there were someone to talk to.
Such awful treatment but sadly so common and it still happens all the time. Yesterday i had an appointment at surgery as I was asked to come in because of results of blood tests. The young locum first asked why I was there? Genuine confusion on my part at this and then he said you iron results are only a little low you will be fine. I nodded and not until I was home did I remember I should have explained I have been on high dose iron months so it shouldn’t be low. Somehow he then began to talk about FND as the cause of all my symptoms and printed out exercises to help with FND dizziness and suggested I find answers in a website. I give up. It’s been so long dealing with drs who dismiss, minimise and patronise. Why should anyone with ME still have to deal with this?