From Lancashire UK Michael J Wormald Author and M.E. Sufferer
The original article below, caused out rage on Facebook, Twitter and amongst Bloggers and Health Forums.
The article may have highlighted the inconsistent way in which the NHS and Dept. of Health still refer to the condition as Chronic Fatigue Syndrome (CFS), but made ridicule of those suffering from 'Chronic Fatigue' or had been diagnosed with M.E. (Myalgic Encephalomyelitis or Encephalopathy)
27th June 2015 :
[Copy of Email exchange with Daily Mail is included in the Word Doc. attached]
Firstly Neurologists in the position to diagnose M.E. or in fact any genuine M.E. sufferer will tell you, - it takes more than year, normally two years minimum before a diagnosis is given. Normal Fatigue, Chronic or otherwise is recoverable possibly in 1 to 2 years.
- Find the cause of Fatigue, or
- Identify Neurological symptoms?
- There are TWO distinct groups of patients!
- Get it wrong and you will be facing Malpractice in either case!
Waiting for Diagnosis or recovery is always stress for the patient.Instead of labeling 'fatigued' people with CFS/ME and then forgetting about them, GP's need to investigate for immediate cause and when no is apparent then investigation by a Neurologist might look at M.E., however given the symptoms may also investigate M.S. (Multiple Sclerosis) or other causes of Neurological damage or inflammation.
Therefore I hope you see how useless the CFS label is?In fact the term 'Yuppie Flu' seems only to be used in the media, and not attached in any legitimate way to M.E.
CFS is a toxic term, the world renowned expert Dr. Byron Marshall Hyde, who completed research for the WHO and several governments on CFS / ME, criticizes the term CFS and recommended it NOT be used. That was 2007.
Fatigue itself should not be treated lightly.I have the deepest sympathy with people suffering from fatigue – which can be caused by stress, depression, cancer, Acute illness or major surgery. Fatigue is recoverable over a long period, or through sustained rest and appropriate rehabilitation.
M.E. is Not recoverable.Myalgic means pain Not Fatigue.
The label and use of 'syndrome' as an umbrella term in either case is putting patients at risk, ignoring the source of the problem(s).In both cases, be it apparent Chronic Fatigue as a 'symptom' be it caused by a Heart problem, Depression or Cancer treatment (for example) or through possible neurological impairment. The implication is Medical Incompetence or Malpractice which leaves patients confused, un-diagnosed, diagnosed too late or inappropriately medicated.
The Daily Mail failed to investigate or validate the claims made by Samantha Cameron's Sister against medical or published fact; then went on to suggest a cure for M.E., which at the moment is without a cure leaving M.E. suffers 'Existing' with pain instead of 'Living' for not for 1 year – but decades!
The claim that 'Samantha Cameron's sister' 'recovered from a year of ME by diving into the crystal sea, the cold literally shocking the sickness out of [her] system,’ is what has infuriated M.E. suffers most.
The claim not only confirms that Samantha Cameron's sister has not in anyway suffered the pain that M.E. sufferers have for years, which go on for decades.The average M.E. sufferer, depending on their current state might not be able to walk or travel to get to the sea, and be in this state for decades.
From personal experience I can say that when I was taken to the sea or on 'holiday' any benefit is out weighed by the pain and additional stress caused by getting there or being away from home. Generally I need 10 days to recovery from a holiday half that length!
The patchwork attitude and lack of consistency in the NHS (UK) not only causes stress for the M.E. sufferer, but confusion which adds to the unnecessary animosity between patients and doctors, or patients and patients.
Some labeled with CFS, think they will or have recovered are fighting with those whose pain and brain scans prove they will never recover.
Meanwhile the NHS in the UK has no consistent plan for long term treatment allowing instead false hope by misuse of the term CFS, or by causing unnecessary worry for someone who simply has Fatigue and requires longer to recovery from an acute infection?
The message M.E. sufferers would like to send to the public, press and false or cheating charities, is enough is enough stop causing confusion, we are in enough pain:
ME Suffers comments in response to the Daily Mail:
'Once again the ME community is being ridiculed'
'Cold water? What about the muscle spasms and cramps of M.E. that with cold water would be positively dangerous?'
'I'm more concerned about the ignorance amongst the medical community. The press in general just want to sell papers so go for sensationalized head lines'
'This confusion is why our charities are not good enough, the reason we have this CFS/ME mess, no state research, few decent services & no clear recognition of M.E as a serious disease!"
'Direct those Muppets [Daily Mail] to a description of this illness! Daily mail, thank goodness that will be used as tomorrow's Fish and Chip paper that's all I can say!'
'That woman sounds like a right bimbo if you don't mind me saying. That's the equivalence of an 'MS' sufferer saying they cured themselves by skinny dipping in the English Channel? Eh no, that just doesn't happen! She must've been misdiagnosed?!"
'Just because a 'dip in the cold sea was good for 1 person, doesn't make a 5 minute cure!They are trying to make out that M.E. is trivial!'
Michael J Wormald Publishing was established to publish Historical Fiction and Non-Fiction, Science-Fiction, and Children's books.
Michael is a former Engineer with a wide experience, he worked for many years worked in the field before moving into defence he worked on Projects for the Army, Navy and most recently the RAF.
Also a Whistleblower who has gone through an appalling struggle to make people listen to his Safety fears.
Michael J Wormald Publishing intends to promote the Truth, lessons from History and value in those lessons.