Tag Archives: myalgic encephalomyelitis

1 year M.E. Joke not funny? Press Release

Daily Mail Article Leaves M.E. Sufferers Fuming

Press Release  •  Jul 02, 2015 13:13 BST

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 :  Click link Below of Full Copy of Press Release

http://www.mynewsdesk.com/uk/michael-j-wormald-publishing/pressreleases/daily-mail-article-leaves-m-e-sufferers-fuming-1187694

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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


The NHS promise; broken. M.E. Myalgic Encephalomyelitis

Have you ever read the NHS promise? Take a day off from Blogging to give it a read; then email to your MP (You may use the text below if you wish.)

By refusing to use and recognise M.E. as a condition in its own right are the NHS unlawfully discriminating against patients in the provision of NHS services?  Sadly the answer is probably yes.  As an M.E. sufferer have since diagnosis by a Neurologist in 2007 I have had no further access to any Neurologist or Neurological team. I have been lumped in with other conditions which cause fatigue.

Myalgia means pain, not fatigue.  The NHS has refused to remove the WHO (World Health Organization) un-supported term “Chronic Fatigue Syndrome” from their website, nor has the NHS provide any Neurology led support for the unfortunate sufferers of this condition.

NHS and Medical council use of specialist advise from outside the field of Neurology is inappropriate and if tested in court may well succeed in any claim against the NHS.

The Nightingale Research Foundation was asked to present findings to the House of Lords and Commons which it did in 2007.  The report was accepted in full.  The Government’s failure to act on the report is a further failure which could be legally tested.

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.  This is why ME is a Neurological condition. It is not simply fatigue.

Encephalitis is recognised as a killer. There is no specific treatment for Measles Encephalitis which is a rapid progressive encephalitis caused by a chronic infection with the measles virus, similar damage can be caused by many other viral and bacterial infections and even some vaccines.   The damage from infection and fever can be halted by medication if treatment is started at a very early stages, hours rather than days if treated in hospital.   But about the thousands of others who suffer infections of home and survive chronic infection or whose fever was treated at home? There is no data.

When and if observed Measles Encephalitis is characterized by a history of primary measles infection several 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. These symptoms match those with M.E. (Myalgic Encephalomyelitis or Encephalitis) even though the M.E. patients previous history of infection is unknown – there is NO REASON for the NHS to dismiss the possibility of Encephalitis causing deterioration of nerve and spinal tissue scars and recognise the Neurological condition.

Common viruses like Hepres Zoster, measles, mumps, polio, hepatitis B, pertussis, diphtheria, measles, mumps, rubella, pneumococcus, varicella, influenza can cause Encephalitis. 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 off the ball’ for many types of viral and bacterial infection due to wider use of 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?

Please take action on M.E. (Myalgic Encephalomyelitis or Encephalitis) and ensure Neurological services are available.

Take action to stop the use CFS in relation to Encephalitis. Myalgic means Pain not Fatigue. People with M.E. are not active and suffer unrefreshing sleep; they are not simply ‘fatigued’ by activity or stress.

There have been too many fatalities and too much suffering due to mistreatment and diagnosis.  Please demand action from the NHS.

[insert name]

 

Ref:

M.E Fatalities:

http://www.hfme.org/topicmefatalities.htm

Find your MP: http://findyourmp.parliament.uk/

http://en.wikipedia.org/wiki/NHS_Constitution_for_England

http://www.nhs.uk/Conditions/Encephalitis/Pages/Introduction.aspx

Google search for M.E. (result is NHS CFS?!)

https://www.google.co.uk/search?q=ME&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-GB:official&client=firefox-a&channel=sb&gfe_rd=cr&ei=BIt0U7yNLKu10QW-yIGIDQ#channel=sb&q=NHS+ME&rls=org.mozilla:en-GB:official

 

 


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.

 

 

 


Kindle Poetry Haiku List

Haiku is a short form of Japanese verse typically characterised by three qualities:

  • Juxtaposition of two images or ideas and wording or idea between them, a kind of verbal highlighing of the juxtaposed elements.
  • Traditional haiku consist of 17 in three phrases of 5, 7 and 5 on (syllables) respectively. A Kigo (seasonal reference), or reference to motion or time.

one of my favourites by Bashō:

at the ancient pond
a frog plunges into
the sound of water

Modern Japanese haiku are less strict in form and subject, but the use of juxtaposition continues to be honored in both traditional and modern haiku.

There is a common perception that the images juxtaposed must be directly observed everyday objects or occurrences; this is not neccessarliy the case, but helps define the form or distill the experience being expressed.

In Japanese, haiku are traditionally printed in a single vertical line while haiku in English often appear in three or four lines to parallel the three phrases of Japanese haiku.

Modern Haiku can be just as brilliant in clarity take this cutting examble Second Prize The Robert Spiess Memorial 2013: Margaret Dornaus

alphabet soup
I practice cradling love
in a stainless spoon

Writing Haiku

Haiku  on Kindle

The Heart of Haiku by Jane Hirshfield

Illustrated Basho Haiku Poems

Reflection Haiku: Living Modern Lives the Simple Way – Lily Wang’s English and Chinese Zen Shorts by Lily Wang

Reflection Haiku: Living Modern Lives the Simple Way – Lily Wang’s English and Chinese Zen Shorts
Night Fall (Haiku For The Evening Shade)
Haiku
Intro to Haiku: An Anthology of Poems and Poets from Basho to Shiki
Haiku: This Other World

Kindle books from Michael Wormald

The Long Hard Highway

Kindle Edition Cover

The Long Hard Highway [Kindle Edition]

by Michael Wormald

Poetry, Haiku and reflections on the difficulties of living with ME.

Haiku XI
C
heap sword hanging
B
y a good
D
emands more attention

Haiku XIX
I
nside neon bright
O
utside moon full burns
See; dream.

Poem, ‘Dreams of Forgotten Love’, Extract:

Whispering echoes return from sleeping memory.
S
ipping potions divine, drowning in forgotten loves glory.
L
ike the recognition of a long forgotten perfume,
D
istant faces blotted; clear once more a bloom.
S
he is there lingering with lost affection,
T
he only light coming from re-surfaced emotion

Souls of dead poets, –
S
eeking then resting like weary travelers,
I
n a fool’s paradise, unreal and decayed.
T
he forgotten flower of Love, withered without sunlight.
W
hat’s the point of trying to keep it alive without light.
L
ike a never ending epitaph to a memory,
Y
our path has been too long and too hard to go back.

Leave your sour scars, forgive and forget yourself.
F
ools gold to forgive all but yourself.

Michael Wormald


Kindle Poetry The Long Hard Highway

Poetry Collection; ‘The Long Hard Highway’ is a collection of poems by aspiring British poet, writer and researcher of historical fiction, and children’s author Michael J. Wormald. Self published for the first time on Amazon Kindle 2013.

The poems are documented by the author with his personal experiences dealing with Myalgic Encephalitis (Chronic Fatigue Syndrome), Depression and life.

The poems were written during previous turmoil some twenty years ago, long before he was finally given the diagnosis, and the validation for his view and approach to his illness and tribulations.

Full of moving and motivational verses steeped with imagination and passion. If you want to see things in a new light you’ll find insight here.

A moving and thought provoking guide to the mysteries of M.E. and its affects through honestly written poetry and verse.

Michael is not afraid to tackle his subjects directly; written in a range of classic and modern styles. The pen sometimes imagined and wielded as a sword; sometimes as a feather. This collection is an honest reflection of the trials of M.E. and how it put a life on hold.

Poetry Collection; ‘The Long Hard Highway’ is a collection of poems by myself, Self published for the first time on Amazon Kindle 2013.

The poems are documented with personal experiences dealing with Myalgic Encephalitis (Chronic Fatigue Syndrome), Depression and life, from the twenty years ago when things first started to go wrong.

Vote for poem ‘Heart if Oak’ in competition:

http://www.poemhunter.com/contest-vote/a-heart-of-oak/

Poetry Competition
Heart of Oak from Kindle book ‘The Long Hard Highway’

From the book

“The Long Hard Highway” is live in the Kindle Store and has been enrolled in KDP Select. It is available* for readers to purchase:

The Long Hard Highway

My blogs:

Whistleblowing

Myalgic Encephalomyelitis


Myalgic Encephalomyelitis

The UK and Myalgic Encephalomyelitis

I live in the UK with M.E..  Living with ME is difficult.  Everything becomes difficult.  Getting out of bed feeling unrefreshed is difficult.  Coping with fatigue and pain every day is difficult.  It is so often forgotten that every effort is affected – including breath and heart rate.  Most difficult of all is coping with life.

For starters the Government and NHS aren’t doing a thing about M.E. as a classified illness.  Currently once diagnosed – that’s it; there’s no specialists, no treatment, no hope.

The DWP won’t acknowledge M.E., it currently is not within the set of categories in the DWP or ATOS system… – they still use the old ‘CFS’ category which is a catch all of anything or any one with ‘Chronic Fatigue’ as a symptom – be it over work, Stress, Cancer, MS or other injury.

Under the current system ESA anyone with M.E. is unlikely to recognized as being unfit for work – regards of what the doctor’s say.  I’ve been signed off work for over a year and the I do receive full ESA yet as my appeal is stuck in the system.  This will only get worse as the rules change.

If I don’t starve to death, or lose my my house before my appeal; afterwards I will have go through the same thing all over again when the ESA rules change.  I don’t hold out any hope for the DWP and ATOS updating M.E. as a classified illness – the World Health Organization does; the medical profession has changed tack as well – wary of misdiagnoses claims since presentations to the house of commons and the house of lords  told them CFS was a fudge – and M.E. is a separate condition.

Statistically those of my age suffering from M.E. are mostly to die of undiagnosed Heart disease, undiagnosed cancer, or suicide.  The lack of support and follow up after the M.E. diagnosis is tragic – this is why secondary conditions are diagnosed too late to save the patient.  Lack of support and understanding – its no wonder suicide is the highest killer.  Note the death cause is recored as heart, cancer or suicide not M.E.   As I wrote above every effort is affected – including breath and heart rate.

It is sad that so little is done or recognized.

Legally there is no precedent to help sufferers.  Except one. Euthanasia; since a number of people have now been acquitted of murder charges (for assisted suicide) despite ignoring or failure to get some of the improved mediation available to M.E. suffers.  It is alarming the number of case which set precedent!

I ask you is normal in a modern society like ours, to recognize one illness and treat it or more than other – or ignore it altogether?

More Links:

http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome

http://meagenda.wordpress.com/2010/02/05/bbc-accused-of-promoting-euthanasia-by-ignoring-rights-of-disabled/

http://www.telegraph.co.uk/health/healthnews/9699911/ME-isnt-all-in-the-mind-but-its-still-a-mystery.html