Someone posted this on Facebook today and I found it quite interesting. So many similarities between them and yet poles apart in terms of recognition and treatment…
Mags xx
It’s very fustrating. My mum has had ME for 20 years, I have had ‘CFS’ for 10 years and now have MS symptoms and am going for a brain scan. My mum had a relapse 3 years ago and they thought she had MS but her brain scan didn’t show lesions. One of the problems is that all the funding over the past couple of decades has gone into research for the physcological viewpoint, it’s only recently that it’s starting to be viewed as a neurological condition. People with both ME and MS can suffer greatly. Both can be bedridden. The level of support should be equal for both conditions. There should be trained ME nurses, as there are for MS. I know my mum faced doctors and nurses in hospital 20 years ago who were very unkind and were sure it was all in her mind. They even forced her on an excerise bike (!). I hope it will all change soon so people can get the help they deserve for this terrible illness.
xx
It’s very fustrating. My mum has had ME for 20 years, I have had ‘CFS’ for 10 years and now have MS symptoms and am going for a brain scan. My mum had a relapse 3 years ago and they thought she had MS but her brain scan didn’t show lesions. One of the problems is that all the funding over the past couple of decades has gone into research for the physcological viewpoint, it’s only recently that it’s starting to be viewed as a neurological condition. People with both ME and MS can suffer greatly. Both can be bedridden. The level of support should be equal for both conditions. There should be trained ME nurses, as there are for MS. I know my mum faced doctors and nurses in hospital 20 years ago who were very unkind and were sure it was all in her mind. They even forced her on an excerise bike (!). I hope it will all change soon so people can get the help they deserve for this terrible illness.
xx
I think ME has actually been been classified as a neurological condition since 60s. However, a recent study by UK ME foundation found that over 80% of neurologists do not believe ME to be a neurological condition. that is not to say that they are saying it is not ‘real’; just that many neurologists are not convinced the condition is neurological.
The term ‘myallgic encephalomyelitis’ comes from ‘myalgic’ meaning ‘muscular pains / stiffness’, and ‘encephalomyelitis’ , meaning ‘inflamation of brain and spinal cord’. However, research studies do not show any recognised pathology involving inflamation in brain or spinal cord / CNS in patients with ME. Therefore, in UK at least, many doctors try to move away from the term ME, as it is felt in some circles that the name might be misleading.
at the hospital that I go to, there is a ‘Fatigue and Pain Management Centre’, with nurses and support staff speciaising in the management of conditions such as CFS and fibromyalgia. a childhood friend of mine has had fibro for over ten years, and has had good support from the pain / fatigue centre. I think it may be quite similar to the situation faced by people with MS in the sense that perhaps services / support vary a lot depending on geographical location / postcode lottery etc. And I definitely agree that people with difficulties need support and care, regardless of what their diagnosis is.
The problem is, people with ME suffer so much, but try and get it identified for being pensioned off with ill health retirement and I think it is still frowned upon and ridiculed as the ‘yuppie flu’ it was nicknamed as back in the 80s. I wish those people who made these decisions were able to understand how bloody disabling it can be before making judgements! Maybe one day eh.