As someone who has had severe ME for 32 years, I’m very pleased that these eminent social scientists have done this report and I hope their conclusion will impress others throughout the whole world of healthcare enough to change attitudes and make it feel safe to have this complex (though not as complex as some researchers would like us to believe!) illness. Alongside funding research, educating HCPs in these illnesses is vital so patients won’t dread Drs and hospitals who don’t understand LC and ME and, frankly, can’t be bothered to try to. At the moment patients feel profoundly unsafe at the mercy of the NHS.
My daughter has just graduated with her BA from Oxford and is about to start her Master's there. Since having covid she has POTS and long covid, the university has been supportive in giving her lift passes for libraries and accommodation without stairs. She has had some tutors who will immediately open windows in tutorials for her. She masks everywhere. She tends to sleep through at least a couple of days a week and had to pace herself very carefully.
I have ME/Fibromyalgia and have done for 30 years. Thank you for your work on this. Did you mask for the workshops/have ventilation/air purifiers?
Thank you for noting that the pandemic is ongoing. There are still thousands dying every day worldwide. There are over 200,000 articles showing considerably more acute health issues post-SARS2 infection than in patients with ME. I had ME for a decade before SARS2 infection. My life now is unbearable compared with pre-infection ME. The brain fog is actually brain damage, as found in countless studies. Thank you for drawing attention to both diseases. They both need immediate attention even though the pathophysiology is different. We are in the midst of the largest plague mankind has ever faced. Thank you for raising awareness. 1st wavers are dying off as this virus continues to attack people's immmune systems in ways we've never seeen since HIV. https://whn.global/public-service-announcement/
Thank you for researching LC and ME. It’s galling that 17 million people worldwide are disregarded and prejudiced against and so little action is taken so it means a lot that you trying to make a difference on our behalf.
I wanted to note that it’s not just medical teams that can cause harm through their lack of understanding. Although many families of pwLC and pwME are wonderfully supportive, some aren’t. I’ve read experiences of many people whose families don’t understand that these are serious physical diseases and instead make out that their relative is making it up and instead has psychological problems. It’s incredibly damaging and scary when you can’t advocate for yourself and I wish more was done to address the lack of understanding in families too.
As someone who has had severe ME for 32 years, I’m very pleased that these eminent social scientists have done this report and I hope their conclusion will impress others throughout the whole world of healthcare enough to change attitudes and make it feel safe to have this complex (though not as complex as some researchers would like us to believe!) illness. Alongside funding research, educating HCPs in these illnesses is vital so patients won’t dread Drs and hospitals who don’t understand LC and ME and, frankly, can’t be bothered to try to. At the moment patients feel profoundly unsafe at the mercy of the NHS.
My daughter has just graduated with her BA from Oxford and is about to start her Master's there. Since having covid she has POTS and long covid, the university has been supportive in giving her lift passes for libraries and accommodation without stairs. She has had some tutors who will immediately open windows in tutorials for her. She masks everywhere. She tends to sleep through at least a couple of days a week and had to pace herself very carefully.
I have ME/Fibromyalgia and have done for 30 years. Thank you for your work on this. Did you mask for the workshops/have ventilation/air purifiers?
Thank you for noting that the pandemic is ongoing. There are still thousands dying every day worldwide. There are over 200,000 articles showing considerably more acute health issues post-SARS2 infection than in patients with ME. I had ME for a decade before SARS2 infection. My life now is unbearable compared with pre-infection ME. The brain fog is actually brain damage, as found in countless studies. Thank you for drawing attention to both diseases. They both need immediate attention even though the pathophysiology is different. We are in the midst of the largest plague mankind has ever faced. Thank you for raising awareness. 1st wavers are dying off as this virus continues to attack people's immmune systems in ways we've never seeen since HIV. https://whn.global/public-service-announcement/
Thanks for the link
Thank you for researching LC and ME. It’s galling that 17 million people worldwide are disregarded and prejudiced against and so little action is taken so it means a lot that you trying to make a difference on our behalf.
I wanted to note that it’s not just medical teams that can cause harm through their lack of understanding. Although many families of pwLC and pwME are wonderfully supportive, some aren’t. I’ve read experiences of many people whose families don’t understand that these are serious physical diseases and instead make out that their relative is making it up and instead has psychological problems. It’s incredibly damaging and scary when you can’t advocate for yourself and I wish more was done to address the lack of understanding in families too.