Tag Archives: nhs

1 year M.E. Joke not funny? Response

Further to yesterdays post about the Daily Mail Article, I have had an initial response.

“Dear Mr Wormald

Thank you for your thoughtful response to the item about Samantha Cameron’s sister’s description of her period of suffering from ME. We are sorry to learn that you believe it to be outdated and inaccurate.

The account given of ME is based on what Emily Sheffield has herself reported of her experience, which is clearly different from yours. It is not intended as an objective or medical report and in reporting that she recovered in a sudden and dramatic way, there is no implication that she found a ‘cure’ applicable to other sufferers.

The item, which is part of a diary column focussing on celebrities, also summarises what has been the reaction in the past of some people, including professionals, to the condition. It states that the diagnosis ‘has been met’ with scepticism and ‘was dubbed yuppie flu’. It also states that sufferers  ‘tend to be aged between 20 and 40’, when younger and older people are also afflicted.

Therefore while I cannot agree that the article is inaccurate I would like to thank you for taking the time and trouble to send us your views. Please be assured I have forwarded your e-mail to Mr Shakespeare. We appreciate all feedback as it helps to inform our journalists and the editorial decisions we take on a daily basis.

Kind regards

Rehema Figueiredo

Corrections’ Department”

Well here we go again…  M.E. doesn’t “tend to be aged between 20 and 40”.  I’ve never heard or read anything about “yuppie flu” outside of the drivel we get in Newspapers.

If like me you continue to be disgusted about the way M.E. is represented in the Press please post comments about how the original article (http://www.dailymail.co.uk/news/article-3141161/SEBASTIAN-SHAKESPEARE-stricken-year-says-Sam-Cam-s-sister.html   (By Sebastian Shakespeare for the Daily Mail)) Made you feel.

Feedback is greatly appreciated I intend to write about this further.


1 year M.E. Joke not funny?

To the Daily-mail, UK: ‘editorial@mailonline.co.uk’; ‘corrections@mailonline.co.uk’

I am writing over concerns over the inaccuracies and total absence of credible fact in the article below.

http://www.dailymail.co.uk/news/article-3141161/SEBASTIAN-SHAKESPEARE-stricken-year-says-Sam-Cam-s-sister.html   (By Sebastian Shakespeare for the Daily Mail)

A person suffering from M.E. Myalgic Encephalomyelitis, a serious neurological condition, would be very, very lucky to get a diagnosis in less than a year.  Let alone find a cure to this incurable condition?!

Encephalomyelitis or Encephalitis, and the pain (that’s what Myalgic means) is diagnosed over a long period where neurological pain and degeneration or inflamation in the nervous system has been observed over a LONG period.

My diagnosis took five years, and explained a period of illness and degenerating health and unexplained pain over a period of 20 years.  My medical retirement at 42 has not helped – since I still can’t support myself.  Nor is there any cure to be offered.

M.E. Myalgic Encephalomyelitis is NOT fatigue.  I wake up with PAIN and go to sleep with PAIN regardless of the exertion in between, there is marked increase in pain on exertion which may require days to get over.

CFS Chronic Fatigue Syndrome is not a useful, or scientific or medical term.  The World health Organization and the Nightingale Research Foundation, who presented a report to the Lords and Commons in 2007, have repeatedly called on governments and the NHS to stop using the CFS label; since GP’s, even specialists and Health ministers alike are all liable misuse and misrepresent the term.  I would describe CFS, for want of a better term, as a ‘toxic description’ of these two distinct groups of illnesses.

I have the deepest sympathy with people suffering from fatigue –which can be caused by stress, depression, cancer, serious illness or major surgery.  Fatigue is recoverable over a long period, or through  sustained rest and appropriate rehabilitation.

I’ve had sustained rest, tried the rehabilitation and over the long term, this has no effect on the type of distinct pain I and M.E. sufferers experience.  Since the pain is quite distinct and when recurring over a long period it is clear the M.E. is a condition separate from fatigue, the source being narrowed down to neurological, then the diagnoses can be made correctly.  This is not generally done in under a year?!

I also have the deepest sympathy for all the poor souls who are floating between two extremes not knowing if they have been given the correct diagnoses by their GP (or more properly a qualified  neurologist?)

The idea the M.E. could be championed by someone who has had a sudden ‘miracle’ cure is not funny.  This article is in poor taste, ill-informed, and shows a poor standard of journalism.

I hope you will investigate, print a retraction or start over with a better informed source.  Try a neurologist?  Indeed we have a champion in Byron Marshall Hyde M.D. who wrote the report for the Nightingale Research Foundation…

The problem now is not that the condition is met with skepticism, but that it is met with pure ignorance in the press which is carried over into the NHS and Government.  For all out sakes get your facts from a legitimate source!

Regards

Michael Wormald

Long term M.E. sufferer 25 years and counting


Trade aggrement with Afghanistan and Astrazeneca can make the drugs the NHS needs?

Poppy control in Afghanistan a failure? GOOD!

MPs slam UK record on controlling Afghan opium poppy harvest

A cross-party report says attempts to manage levels of poppy cultivation in Afghanistan have been a failure, well good I say.

Afghan farmers know nothing else growing poppies is what they do; unless they are shooting at people who try to destroy or steal their crop.

Attempts by successive governments to control the Afghan opium poppy harvest  (Which may well be the source of some of heroin that comes to Britain) has been a failure according to a new report.

However the UK and NHS is desperate cut funding and cost of medicine.  It is also desperate to keep its own Pharmaceutical industry (like Astrzeneca)!  Most of the pain killers used are expensive and derived from Opiates or  Opioid alkaloids found as natural products in the opium poppy plant, for making Morphine agmoust many others.

Why should we buy drugs made from Californian poppies from Pfizer?  We could have a trade agreements with Afghanistan and Astrazeneca can make the drugs the NHS needs!  This also provides a steady safe income to the Afghan farmers; the only income they have.  UK and other NATO countries need not worry about illegal import of Heroin if the Afghan’s turn to a steady regular income instead of the illegal Heroin which has led to so much conflict!

Trade in Opium is legal when used to harvest the opium for the Pharmaceutical industry.  In the UK we grow it Oxfordshire!  It is utter hypocracy to destory what we need; and punish those who farm it!  Sure it might be an advantage to the US to control the world’s suppy of Morphine and control the world’s Pharmaceutical industry!  But why should we be that stupid?

Please Share.

Other ref:

US State Blocking of Legal Afghan Opium Export

Feasibility Study on Opium Licensing in Afghanistan (PDF)

 

 

 


Inflamation of the Spinal Cord and Brain

Myalgic Encephalomyelitis or encephalitis inflammation of the brain and spinal cord. So why was Emily put in a Psychiatric ward?  Why did she and others have to die?

 

Myalgic Encephalomyelitis

Death

 

Myalgic means pain, not fatigue.  The NHS still will not remove the un-supported term “Chronic Fatigue Syndrome” from their website, nor has the NHS has a specific policy nor does it provide support for the unfortunate sufferers of this condition.

 

Typically caused by or re-triggered by many chronic infections (non-specific).  More people than ever are surviving previously chronic conditions; nobody is gathering data on the survivors?

 

It is widely recognized that Acute Disseminated Encephalomyelitis (ADE) like the damaging Measles Encephalitis is caused by a wide range of viral and bacterial infections and even some vaccines.  Its symptoms are measured in hours or days from onset of symptoms (when luckily recognised or observed) unusually severe or sudden onset of neurological symptoms are often masked by the symptoms of triggering infection.

 

How many times have you had a high fever and slept it off?  You probably took action to treat the fever; but what about when this is delayed a few hours or days?

 

In case of infections being luckily observed and immediately treated, Children tend to have more favourable outcomes than adults, cases without fevers tend to have poorer outcomes due to poor observation.  The latter effect due to either masking effects of fever, or that diagnosis and treatment is sought more rapidly when fever is present.

 

Recovery is one to six months if death has not resulted,  mortality rate in days following acute infection and encephalomyelitis considered to be about 5%, where patients were observed.

 

Recovery despite continued observable subacute sclerosing (inflammation of nerves and brain) in 50 to 70% of cases [not monitored further], ranging to 70 to 90% recovery with some minor residual disability [some monitoring later] average time to ‘recovery’ is one to six months; even though inflammation in Brain and spine may or may not remain. [No data collected]  This is as far as studies went when carried out by the National Institute of Neurological Disorders and Stroke (NINDS).

 

For example ‘Measles Encephalitis’ is recognised as a killer; has a mortality rate of 15%, there is no specific treatment for Measles Encephalitis which is a progressive encephalitis that is seen (or traditionally recorded in) children and young adults, caused by a chronic infection with the measles virus.  The condition can be managed by medication if treatment is started at a very early stage, hours rather than days.  Some studies have been carried out by the National Institute of Neurological Disorders and Stroke (NINDS).

 

Measles Encephalitis (which some data has been collected – up until vaccination became common) is characterized by a history of primary measles infection several asymptomatic (normal) years (6–15 on average), and then gradual, progressive psychoneurological deterioration, consisting of personality change, seizures, myoclonus, ataxia, photosensitivity, ocular abnormalities, spasticity, general malaise, fatigue and coma.

The Brain and the spinal cord carry the signals which make everything in the body work. including pain signals; normal muscle function; the adrenal system; hormones; senses; digestion and energy absorption etc etc.  This is why ME is a Neurological condition. It is not simply fatigue.  The weird effects on the signals around the body are the least well explained; only when you’ve thought it through can you recognise this, it taking some patients years to figure what changes are occurring.

There remains a black hole in the data regarding low level damage caused by subacute sclerosing and Encephalitis in a population which is aging and where medical professionals have taken the ‘eye of the ball’ for many types of viral and bacterial infections such as measles, mumps, polio, hepatitis B, pertussis, diphtheria, measles, mumps, rubella, pneumococcus, varicella, influenza due to vaccination or reduced presentation of symptoms arising from use of paracetamol and other medication in the community.  Killer childhood diseases may now be survivable with vaccine or home treatment; but that doesn’t mean that scars are not left behind?

Sufferers of Myalgic Encephalomyelitis in the UK are abused, neglected and ignored they also lumped in with another group of patients suffering from Chronic Fatigue – which is accepted as be triggered by anything from stress or Cancer?

In patients confirmed to have M.E. the effect on the heart as a muscle is often overlooked. Muscles in the body of ME patients work at only 90-80% efficiency, recover slowly and do not respond to activity as they should. This causes not only pain in the heart, and a lower blood pressure, but lower efficiency in circulation and breathing (the diaphragm is muscle too.)  The source of the problem is enflamed nerves and brain. Not easily visualised or understood. The inflammation and its effects are strange enough, but also trigger anxiety and inappropriate adrenaline response.  Over time the patient will become chronically fatigued due to the imbalance caused by the dysfunctional nerves and develop anxiety and depression.

If you haven’t had the weird, repeating symptoms typical of ME (psychoneurological deterioration, personality change, seizures, myoclonus, ataxia, photosensitivity, ocular abnormalities, Hyperacusis, Misophonia ) prior to onset of fatigue then you haven’t got ME. You were probably simply fatigued, chronically or otherwise this is a totally separate issue.  Chronic Fatigue Syndrome doesn’t go anywhere near capturing the symptoms of ME.   Syndrome simply means the Doctor doesn’t know how to sort the symptoms out, and is in itself a failure.

Worst source of anxiety is misunderstanding and 95% of this comes from GPs and ME/CFS society and groups, which are run by those with their own opinions about Chronic Fatigue and not are Neurologists.  M.E. is a Neurological condition, nerves don’t work properly and are mixed up, this does not mean the patient is mad?!  The tragedy of Emily Louise could have been avoided if medical professionals stop falling back on opinion and listen to the research done – which has been demanding that proper data is collected and that possibilities outside the present ‘data’ are correct.    That Subacute sclerosing and Encephalitis is both more widespread and survivable than thought, and in an aging population, who’ve had access to better treatment could account for the number of M.E. patients – who are still waiting, dying for recognition!

Please pass on.