Situation for ME patients in Wales is ‘disgraceful’
a translation of: Sefyllfa i gleifion ME yng Nghymru yn ‘warthus’ on the BBC Cymru fyw website, 24 Oct 2018 (This translation is not definitive, it may need some tweaking!)
Emma-Jayne Lloyd from Cardiff shares her experience of living with the condition of ME.
The situation for people in Wales who suffer from the condition of ME, or chronic fatigue syndrome, is “disgraceful”, according to one specialist in the field.
Charities will be holding a protest at the Senedd in Cardiff Bay on Wednesday to show a movie about the disease.
Jan Russell, from WAMES (Support Society ME and CFS Cymru), has called the lack of diagnosis and lack of advice on symptoms “a health and social care crisis, even a humanitarian crisis”.
The Welsh Government said “health boards in Wales are responsible for the healthcare requirements of their populations”.
‘Lack of understanding’ of chronic fatigue
Speaking on the BBC’s Eye On Wales program, Charles Shepherd, a medical advisor to the ME Association, said:
“From my experience with patients in Wales, many GPs are still very uncertain about how to diagnose this illness.
“They’re just as insecure about how to manage the illness.
“There are five adult services in Wales but none of them are led by a multidisciplinary doctor, and that is what these services should be.
“Overall, the situation in Wales is scandalous.”
Mistaken ME for depression
Emma-Jayne Lloyd, aged 39 and from Cardiff, has suffered from ME symptoms since she was 18, but only last year she was given an official diagnosis.
“Imagine rising in the morning with a hangover, flu and the worst jet-lag you’ve ever had, all mixed up together,” she said.
“Then imagine that you get up every day and feel like that. That’s what ME is.
“The pain is all through the body, you are so tired and you’re so weak that you cannot get up, or dress, or try to make food – everything is difficult.
“Everything you do, you must think about, because everything causes pain, or can cause you to go back to bed and sleep.”
Two years ago Emma-Jayne had to stop her job as a teacher, and she does not drive now
For years, doctors thought she was depressed, and Ms Lloyd says that health workers are only beginning to understand ME.
She says that ME clinics and consultants are available in England, but there is no such provision in Wales.
“There’s nothing in the blood, so they all think it’s something mental,” he said.
“There is no medication, no consultants, no clinic here.
“If you break your arm or have cancer, you know that you can go somewhere and someone with expertise can talk to you – but there is no one with expertise in ME in Wales . “
‘Change is slow’
In 2014, recommendations were made to the Welsh Government on how to improve diagnosis at primary care level, as well as treating and managing symptoms.
An action group was set up in 2015 to work with Local Health Boards across Wales to make these recommendations active.
Owen Hughes, who chairs the action group, said “progress has been slow”.
“There are some very good services in Wales and it’s a shame that everyone does not have those services on their doorstep,” he said.
“That is part of the role of the action group – to share good practice and ensure that everyone is able to access high quality information and services.”
What is ME?
Around 13,000 people in Wales suffer from ME (Myalgic Encephalomyelitis), or chronic fatigue syndrome (CFS).
70% of people with the disease are women – and it is more likely to hit people between their twenties through to their 50s.
The disease is usually triggered by a viral infection.
Symptoms include muscle tiredness caused by activity, often with pain, as well as neurological symptoms such as short-term memory loss and ‘brain fog’.
Patients can also have problems with balance, ability to find words and lack of temperature control.
There is no complete cure to the condition, but symptoms with early diagnosis and with the right advice can be improved.
#TimeForUnrestWales
Millie Earp, 22, from Cardiff, was 17 when she was diagnosed with the chronic illness but says she has learned to accept the condition.
Wed 24 Oct 2018
Jan Russell, Chair of WAMES & patient rep on the government’s All Wales Implementation Group, explained how the recommendations in the Welsh Government’s 
Dr Nina Muirhead, is a surgeon, person with ME & lecturer at Cardiff Medical School. Nina outlined her hopes and plans for Cardiff to be the first university to include neurological ME in medical students’ education.
Anne Kavanagh, 68, from Bridgend, had to give up work and check in to a self help centre, but was told she was not eligible for benefits.
She found a place to start her recovery at the Sandville self-help centre in Porthcawl, where she was able to visit three times a week to do simple exercises.
It is well known that adolescents with chronic fatigue syndrome (CFS) experience greater school absenteeism compared to healthy adolescents. Less is known about other important aspects of school functioning including school participation, school connectedness, and academic performance in students with CFS. The aim of this study was to compare school functioning as a multifaceted construct in adolescents with CFS to healthy adolescent peers. We also explored whether illness factors were associated with school functioning in adolescents with CFS.
The Cochrane Common Mental Disorders Group is currently undertaking a strategic portfolio assessment of all existing and planned reviews and protocols, including those relating to Chronic Fatigue Syndrome (CFS).
The final scope and equality impact assessment for this NICE guideline have now been published [Oct 16th], along with all the stakeholder comments that were received during consultation and our responses to these comments: 
A clinical paradigm shift is necessary to reevaluate CFS and fibromyalgia diagnoses and its relationship to the CDAF entities, which would ultimately lead to a change in diagnostic and therapeutic algorithm for patients with chronic fatigue and chronic pain. Rather than uniformly apply the diagnoses of CFS or fibromyalgia to any patient presenting with unexplained chronic fatigue or chronic pain, it may be more beneficial and therapeutically effective to stratify these patients into more specific diagnoses in the CDAF group.
