The situation for people with ME in Wales is extremely difficult. This is because there is no Specialist Care for people and the GPs do not have any training about the condition during their training. It is left up to them to find out about the condition if they need to or want to. Therefore they often pick up attitudes to those who suffer from ME. It is very hit and miss if someone in Wales gets a diagnosis and if they do, that is that, you just have to live with it. Some GPs might pass the patient on to a Psychiatrist as they are deemed to be mentally ill. Graded Exercise or CBT is often seen as the correct ‘treatment’ for ME.
One woman has had most of the symptoms for 5 years but her GP will not diagnose her with ME as he doesn’t consider it to be a ‘real illness’. He has recently diagnosed her with Fibromyalgia and says that her exhaustion is just a result of the pain that she is experiencing. It is up to her, she can get well if she want to. He doesn’t want anyone from our ME Group to support her to see him.
Another woman of 29 is bedridden but her GP was not really too interested in her needs. She had been sent to Rehabilitation but just got worse. She was too ill to do anything but was thought not to be willing to try. Her Social Worker was insisting that she could do more for herself, as she was written down as previously being able to move around. A new doctor saw her severe needs and sent a nurse to assess her for Continuing Health Care. A Case Conference recognised her needs too, opposing the Social Worker’s assumptions, and immediately put in extra care for her.
A woman in her early 30s is suffering too. Her husband is not coping with looking after her, her Carers will not feed her, as she can’t sit up in bed and they are told that they must not feed her when lying down. The doctor came to visit her and just said that she is young and she needs to try to do more. A Social Worker visited and asked her if she has seen the Mental Health Team. She told her not to read books or to communicate with Groups as she is ‘gaining new symptoms from them’.
The Minister of Health in Wales has just completed a Task and Finish programme on ME recognises that it is a Neurological Condition. He has asked each Health Board across Wales to have an ME Champion. The first meeting was held earlier this year but two Health Boards have not appointed anyone. So still there is little going on and it is a post code lottery for getting a diagnosis or help of any kind, even if one is bed-bound.
In other parts of the UK there are ME Clinics, some of which diagnose people or offer some kind of treatment other than CBT or Graded Exercise. What is it like in other parts of the world?
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the