Extremely well said with lots of practical suggestions that could be initiated by the NHS. I believe the continued appalling treatment of people with ME and LC constitutes human rights violations and mandatory training is the very least that should be input. Perhaps if there were consequences for poor treatment then attitudes would change faster. Imagine if healthcare workers were found to be gaslighting cancer or motor neurone disease patients in the same way – or worse still, subjecting them to forcible psychiatric treatment as some patients are – it’d be all over the press being called a national scandal.
Could the drs PLEASE just read the NICE guidelines as a bare minimum. No GET, no CBT! The course I am doing (my 4th in 15 years - got to keep up to date) still presents the wrong information. I’m so sorry that even now harm is being done through out of date views. So sorry you have been made worse through inaccurate advice. (And on that note I’m off to my zoom call from the MECFS service where I will use a whole days energy listening to rubbish.)
Good suggestions. Sadly probably none will be implemented until ME is recognised by everyone, the medics, politicians, the media, the general public, care services…..everyone, as a physiological illness with obvious symptoms even without an official biomarker.
One only has to read comments under any article on ME in the mainstream press, let alone medical journals, to see that there is still widespread disbelief in the reality of the severity of the illness or whether it exists beyond our heads.
The main charities are of little use and it’s still incredibly hard to break out of our familiar bubble in social media.
Another excellent piece published by #ThereforME. As a teacher who, 3 years post-COVID, is still unable to work, I have met with similar attitudes. I am hugely frustrated by the lack of response from the public sector in general to the evidence that cleaner air and basic infection control measures in public settings can significantly reduce the spread of viruses, thereby protecting both emoyees and patients/students/clients. My eyes have certainly been opened to how ableist and often inaccessible our public infrastructures are. Hopefully we can increase awareness of the debilitating nature of ME first within medicine and the NHS and then across society, particularly in education, social care and within local politics to ensure that sufferers of all ages can participate meaningfully in society in a way and at a level that is suited to their needs.
This is excellent, thank you. To add insult to injury, the healthcare workers who *have* gained specialist knowledge of e.g. PEM are now being moved on as Long Covid clinics close down or scale down. This has just happened in my area. Such a ridiculous waste.
I am so sorry this has happened to you. One of the more painful parts of me being sick for 26 years is seeing more people join the community of those living with post viral illness, whilst in many ways little has changed with healthcare offerings.
Only last week a consultant (not ME or LC) said to me "I notice you have something called Chronic Fatigue Syndrome ... whatever that is." It is incomprehensible how a life altering disease affecting so many people is so completely off the radar.
This is unbelievable. Even as someone without any kind of medical background I did have some basic awareness of the condition. Needless to say LC has taught me much more and shown me how little I did know, but to meet with this kind of unashamed ignorance within the medical profession is shocking.
I’ve had Severe ME for 30 years. And Very Severe ME for the last two years so I’m housebound and bedbound. Last week my GP told me I should be doing some exercise. I said that would make me worse. No response.
It’s deplorable that all levels of the NHS are completely ignorant about ME.
Last summer I had a bad accident when I blacked out and came to on the garden path with my power chair beside me.
Ten days later a GP came to see me about something else. I showed her huge bruises all down my right side and my broken finger which I asked her to buddy bind to the next finger.
She said I had to go to a Minor Injuries Unit. It’s 12 miles away. She was examining me in bed. She knew already I was bedbound, which is why it was a home visit!!
So I complained to the practise and the Clinical Lead for Complaints sent me a very hostile letter and psychologised my disability. She has never met me !
So I notified the Care Quality Commission and I’ve now contacted the Ombudsman.
I’ve been waiting for a Final Response from the surgery for 4 months. When and if it finally materialises, I’ll be escalating to the Ombudsman.
Extremely well said with lots of practical suggestions that could be initiated by the NHS. I believe the continued appalling treatment of people with ME and LC constitutes human rights violations and mandatory training is the very least that should be input. Perhaps if there were consequences for poor treatment then attitudes would change faster. Imagine if healthcare workers were found to be gaslighting cancer or motor neurone disease patients in the same way – or worse still, subjecting them to forcible psychiatric treatment as some patients are – it’d be all over the press being called a national scandal.
Could the drs PLEASE just read the NICE guidelines as a bare minimum. No GET, no CBT! The course I am doing (my 4th in 15 years - got to keep up to date) still presents the wrong information. I’m so sorry that even now harm is being done through out of date views. So sorry you have been made worse through inaccurate advice. (And on that note I’m off to my zoom call from the MECFS service where I will use a whole days energy listening to rubbish.)
Well said, at my last doctor's visit I was told to join a gym.. I am mostly housebound and PEM is horrendous after very small things. 🙄
Good suggestions. Sadly probably none will be implemented until ME is recognised by everyone, the medics, politicians, the media, the general public, care services…..everyone, as a physiological illness with obvious symptoms even without an official biomarker.
One only has to read comments under any article on ME in the mainstream press, let alone medical journals, to see that there is still widespread disbelief in the reality of the severity of the illness or whether it exists beyond our heads.
The main charities are of little use and it’s still incredibly hard to break out of our familiar bubble in social media.
Another excellent piece published by #ThereforME. As a teacher who, 3 years post-COVID, is still unable to work, I have met with similar attitudes. I am hugely frustrated by the lack of response from the public sector in general to the evidence that cleaner air and basic infection control measures in public settings can significantly reduce the spread of viruses, thereby protecting both emoyees and patients/students/clients. My eyes have certainly been opened to how ableist and often inaccessible our public infrastructures are. Hopefully we can increase awareness of the debilitating nature of ME first within medicine and the NHS and then across society, particularly in education, social care and within local politics to ensure that sufferers of all ages can participate meaningfully in society in a way and at a level that is suited to their needs.
This is excellent, thank you. To add insult to injury, the healthcare workers who *have* gained specialist knowledge of e.g. PEM are now being moved on as Long Covid clinics close down or scale down. This has just happened in my area. Such a ridiculous waste.
I am so sorry this has happened to you. One of the more painful parts of me being sick for 26 years is seeing more people join the community of those living with post viral illness, whilst in many ways little has changed with healthcare offerings.
Only last week a consultant (not ME or LC) said to me "I notice you have something called Chronic Fatigue Syndrome ... whatever that is." It is incomprehensible how a life altering disease affecting so many people is so completely off the radar.
This is unbelievable. Even as someone without any kind of medical background I did have some basic awareness of the condition. Needless to say LC has taught me much more and shown me how little I did know, but to meet with this kind of unashamed ignorance within the medical profession is shocking.
Excellent piece. The value of inside knowledge of both NHS and of these illnesses . If only we can make it happen.
I wait with hope. Not a lot of hope, true, but it's better than despair...
I’ve had Severe ME for 30 years. And Very Severe ME for the last two years so I’m housebound and bedbound. Last week my GP told me I should be doing some exercise. I said that would make me worse. No response.
It’s deplorable that all levels of the NHS are completely ignorant about ME.
Last summer I had a bad accident when I blacked out and came to on the garden path with my power chair beside me.
Ten days later a GP came to see me about something else. I showed her huge bruises all down my right side and my broken finger which I asked her to buddy bind to the next finger.
She said I had to go to a Minor Injuries Unit. It’s 12 miles away. She was examining me in bed. She knew already I was bedbound, which is why it was a home visit!!
So I complained to the practise and the Clinical Lead for Complaints sent me a very hostile letter and psychologised my disability. She has never met me !
So I notified the Care Quality Commission and I’ve now contacted the Ombudsman.
I’ve been waiting for a Final Response from the surgery for 4 months. When and if it finally materialises, I’ll be escalating to the Ombudsman.
Andrea Redmond Hind
Cornwall
This article resonated so much with out experience and need for change.
Thank you