Oh come on those are my words not yours. Sheesh I could have written that exact same thing. "My medical records are riddled with errors which leads to encounters with specialists being problematic (& traumatic). They only have time to review a bit of the superficial (inaccurate) record and then they make adamant recommendations which are often more harmful than helpful."
Excellent article I will take a look at the podcast transcript!
Hi Colleen, thanks for sharing that, I appreciate it. I think the brain fog is kicking in for both of us though because I was on my second reading when I noticed that you might want to edit that headline 😉 It made me laugh, but in a good way ( not at you) on a bit of a bad day Xxx
I have watched the interview on YouTube and thought it was very good. My main thought cropping up during it was, who is going to take Dr Speight & Dr Weirs place? They are both still working although Dr Weir is technically in retirement but still seeing patients privately. He has also been involved with Milles case who is an in patient at Royal Lancaster Infirmary.
I am very concerned at the lack of education & simply doctors lack of knowledge of the illness. Who is the baton going to be transferred to?
If you’ve been aware of what’s happening in the UK atm regarding three women inc 18 yr old Mille, it is very frightening that these patients with very severe ME are not being looked after with the NICE guidelines that were fought so hard to be put in place.
Millie went in for a feeding tube in mid January. She is still there with no permanent G or J tube. She is now tolerating her NG feeds fairly well but the family have been told she can’t go home with it as the community are unable (for whatever reason) to care for it. As an ex nurse myself & having a friend who is a nurse in the community I find this astonishing.
Yesterday, there was a debate at Westminster Hall about ME/CFS and many topics were spoken of. It was clearly evident that many MP’s were shocked that NHS hospitals & Drs were not following the guidelines. But there is the answer in the title, ‘guideline’.
Millie had all her cards & presents sent to her at the hospital by the ME community removed due to ‘infection risk’ which is comical considering they disagree with her private ME diagnosis as it wasn’t an NHS Dr and they brought the psychiatrists in.
I believe the same was done to Carla but please don’t quote me on that. Yesterday a safeguarding ruling by the hospital was stopped (DOLS) due to a barrister becoming involved and so the hospital backed down. Apparently 12 Drs are meeting to discuss Carla’s case so there may be an update on her case later today via @TheChronicCollab on X.
None of this should be happening in our hospitals today! This fight that we still have with our illness leaves me flabbergasted.
I reached out to Sajid Javid MP yesterday on X who brought the debate to Westminster with the help of the charity Action for ME to show my appreciation. I stated that the NICE guidelines need to be mandatory & that a protocol for severe/very severe patients with ME be written and enforced so that hospitals and Drs don’t treat patients according to their own thoughts and perceptions.
I had thought that as the younger Drs began to take over their predecessors things would change but sadly the same draconian rules still seem to exist!
We still seem to be in the same place of advocacy in terms of raising awareness about our illness.
What’s even more frightening is that so many Long CovidME patients are going through the same thing, disbelief despite their being a pandemic of which the virus remains virulent and no medical establishment connecting or wanting to connect the dots.
The wording ‘yuppie flu’ may have been dropped but that implication of it soley being a psychological illness obviously rooted into the ground by the Pace Trial seems to live on which leaves a plethora of very sick patients still having to advocate & campaign for an illness that the WHO accepted 54 years ago!
Excuse my seeming rant, it’s been a hard few weeks and all I can do is type out a few posts that may or may not make a difference.
I am also worried about who may be able to follow in the footsteps of Speight and Weir. I am glad you brought up about Mille and Carla. I hadn't heard they took away the cards. The treatment they are receiving underscores how serious the situation is for so many people with ME.
It is beyond belief that there still isn't a protocol in place at the NHS for Severe ME. (Or anywhere else in the world!) We have seen the harm hospitals have done to patients for decades. How many deaths will it take?
Oh come on those are my words not yours. Sheesh I could have written that exact same thing. "My medical records are riddled with errors which leads to encounters with specialists being problematic (& traumatic). They only have time to review a bit of the superficial (inaccurate) record and then they make adamant recommendations which are often more harmful than helpful."
Excellent article I will take a look at the podcast transcript!
Thanks Tamra. I realize I am not alone in this experience...
Hi Colleen, thanks for sharing that, I appreciate it. I think the brain fog is kicking in for both of us though because I was on my second reading when I noticed that you might want to edit that headline 😉 It made me laugh, but in a good way ( not at you) on a bit of a bad day Xxx
If you mean "mayonnaise"... that is the name of the podcast. https://www.pempod.com/
I think that falls into the "humor" part of their work. ;)
Oh! 🤦♀️ Thank you, I didn't realise. That's just me with the brain fog then 🤣
I have watched the interview on YouTube and thought it was very good. My main thought cropping up during it was, who is going to take Dr Speight & Dr Weirs place? They are both still working although Dr Weir is technically in retirement but still seeing patients privately. He has also been involved with Milles case who is an in patient at Royal Lancaster Infirmary.
I am very concerned at the lack of education & simply doctors lack of knowledge of the illness. Who is the baton going to be transferred to?
If you’ve been aware of what’s happening in the UK atm regarding three women inc 18 yr old Mille, it is very frightening that these patients with very severe ME are not being looked after with the NICE guidelines that were fought so hard to be put in place.
Millie went in for a feeding tube in mid January. She is still there with no permanent G or J tube. She is now tolerating her NG feeds fairly well but the family have been told she can’t go home with it as the community are unable (for whatever reason) to care for it. As an ex nurse myself & having a friend who is a nurse in the community I find this astonishing.
Yesterday, there was a debate at Westminster Hall about ME/CFS and many topics were spoken of. It was clearly evident that many MP’s were shocked that NHS hospitals & Drs were not following the guidelines. But there is the answer in the title, ‘guideline’.
Millie had all her cards & presents sent to her at the hospital by the ME community removed due to ‘infection risk’ which is comical considering they disagree with her private ME diagnosis as it wasn’t an NHS Dr and they brought the psychiatrists in.
I believe the same was done to Carla but please don’t quote me on that. Yesterday a safeguarding ruling by the hospital was stopped (DOLS) due to a barrister becoming involved and so the hospital backed down. Apparently 12 Drs are meeting to discuss Carla’s case so there may be an update on her case later today via @TheChronicCollab on X.
None of this should be happening in our hospitals today! This fight that we still have with our illness leaves me flabbergasted.
I reached out to Sajid Javid MP yesterday on X who brought the debate to Westminster with the help of the charity Action for ME to show my appreciation. I stated that the NICE guidelines need to be mandatory & that a protocol for severe/very severe patients with ME be written and enforced so that hospitals and Drs don’t treat patients according to their own thoughts and perceptions.
I had thought that as the younger Drs began to take over their predecessors things would change but sadly the same draconian rules still seem to exist!
We still seem to be in the same place of advocacy in terms of raising awareness about our illness.
What’s even more frightening is that so many Long CovidME patients are going through the same thing, disbelief despite their being a pandemic of which the virus remains virulent and no medical establishment connecting or wanting to connect the dots.
The wording ‘yuppie flu’ may have been dropped but that implication of it soley being a psychological illness obviously rooted into the ground by the Pace Trial seems to live on which leaves a plethora of very sick patients still having to advocate & campaign for an illness that the WHO accepted 54 years ago!
Excuse my seeming rant, it’s been a hard few weeks and all I can do is type out a few posts that may or may not make a difference.
Much love 💙
I am also worried about who may be able to follow in the footsteps of Speight and Weir. I am glad you brought up about Mille and Carla. I hadn't heard they took away the cards. The treatment they are receiving underscores how serious the situation is for so many people with ME.
It is beyond belief that there still isn't a protocol in place at the NHS for Severe ME. (Or anywhere else in the world!) We have seen the harm hospitals have done to patients for decades. How many deaths will it take?
Rant fully understood!