Kati
Patient in training
- Messages
- 5,497
Sent Lady Mar a Christmas Card.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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P.S. Who believes that Wessely did not have sight of the letter written before it was sent to the Independent. I find it very hard to believe that 27 signatories would write about him with support in a national newspaper without his permission or sight of the letter?
Wessely's reply - one might say 'procrastinating'
Uhh?? – ‘better quality of life’ is sure enhanced by being denied homecare, mobility aids, necessary disability benefits, helpful medication, realistic understanding of our illness by doctors, relations, friends – but hey, with CBT/ mindfulness we can put a mind-plaster on the damage caused by the misrepresentation of ME and the illness-plus-deprivation that comprises ME policy in Britain.
Can anyone comment on the validly of this statement? I'm not that familiar with all the inner workings of the medical system in Great Britain. WildCat, I'm not picking on you, but it would help if people who make such statements backup their comments with facts, mine own included.
I have no problem with posters saying a statement is a personal opinion but it's nice to know the difference!!
Barb C.:>)
I'm not sure what you are expecting as facts to back up Wildcat's posting Barb. I'm made a number of them on my personal experience which would echo this one.
My own experience would echo her posting. I think that it is a valid and precise statement of the UK position toward patients.
Not sure what you are after. Just say if you need more help to explain how bad it is here.
As an extra point I'd like to use something else from my personal experience to explain how bad things are here at an official level.
ME patients used to be able to attend the APPG meetings on ME. These are parliamentary groups set up with a special interest or focus. They comprise MP's and members of the House of Lords (like Lady Marr). I was sitting at the table surrounded by MP's and other patients at one of these meetings when this happened to me.
A person sitting next to me introduced herself as an aide to one of the current Ministers (then the Labour party). She wanted to know why PWME didn't "just accept that they had a mental condition and just have it treated". She also said "the only reason you don't accept that you are mentally ill is because you cannot cope with the stigma of mental illness".
At the time this happened I was so weak and in pain that the only way I could sit upright on the chair was to hang on to the table, so I wasn't able to get her name or follow this up. I did manage to put her right about the issues patients faced. When I asked where her opinion was forumulated from she said that the Minister had asked the "advisors" and been told this by the medical advisor to her department.
Yes, it is really as bad as we say it is.
I'm not sure what you are expecting as facts to back up Wildcat's posting Barb. I'm made a number of them on my personal experience which would echo this one.
My own experience would echo her posting. I think that it is a valid and precise statement of the UK position toward patients.
Not sure what you are after. Just say if you need more help to explain how bad it is here.
As an extra point I'd like to use something else from my personal experience to explain how bad things are here at an official level.
ME patients used to be able to attend the APPG meetings on ME. These are parliamentary groups set up with a special interest or focus. They comprise MP's and members of the House of Lords (like Lady Marr). I was sitting at the table surrounded by MP's and other patients at one of these meetings when this happened to me.
A person sitting next to me introduced herself as an aide to one of the current Ministers (then the Labour party). She wanted to know why PWME didn't "just accept that they had a mental condition and just have it treated". She also said "the only reason you don't accept that you are mentally ill is because you cannot cope with the stigma of mental illness".
At the time this happened I was so weak and in pain that the only way I could sit upright on the chair was to hang on to the table, so I wasn't able to get her name or follow this up. I did manage to put her right about the issues patients faced. When I asked where her opinion was forumulated from she said that the Minister had asked the "advisors" and been told this by the medical advisor to her department.
Yes, it is really as bad as we say it is.
‘better quality of life’ is sure enhanced by being denied homecare, mobility aids, necessary disability benefits, helpful medication, realistic understanding of our illness by doctors, relations, friends – but hey, with CBT/ mindfulness we can put a mind-plaster on the damage caused by the misrepresentation of ME and the illness-plus-deprivation that comprises ME policy in Britain.
Not wishing to put words in beaker's mouth, but I read that bit completely differently - as people who are working and do not want their employer/colleagues to know they have ME (for fear of prejudice), not people who could work but do not want to and want to keep that from former colleagues or the tax paying public as (I think) you are reading it?
Similar to the following point about family - if you want to bemoan a lack of support from family without them seeing it and being hurt.
But there comes a point where continuing investigations cease.
Specifically:
Most of the above can indeed be documented. If that isn't clear, so be it.
Barb C.:>)
I would still like to see some documentation about these specific services being denied to ME/CFS patients in the UK>
Specifically:
Most of the above can indeed be documented. If that isn't clear, so be it.better quality of life’ is sure enhanced by being denied homecare, mobility aids, necessary disability benefits, helpful medication, realistic understanding of our illness by doctors, relations, friends – but hey, with CBT/ mindfulness we can put a mind-plaster on the damage caused by the misrepresentation of ME and the illness-plus-deprivation that comprises ME policy in Britain.
Barb C.:>)