Tag Archives: ME

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


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


Whistleblowing or Silent Screaming?

I feel like screaming.  I certainly think that the act of making a disclosure and wrapping up the problem so you can get on with you life or you career is next to impossible in the UK.

Assuming that having made a disclosure; this can be as simple as telling you boss that the Safety barrier is broken; or making a protected disclosure to the right authority.  Can you then settle back into routine at work and be happy as before?

If nothing was done about the problem, you life was made a misery what would you do?  If lives were still at risk, if you working life was being made hell, or you were being fobbed off?  How would this affect you?  Depression, Anxiety, alcohol abuse, – divorce?  Loss of income; debt, mortgage arrears, house repossession?  All because you wanted to do the right thing?

Many people would simply leave and let the wrong doing go on.  I have say that is the most sensible thing to do in the UK.  Many people simply don’t want a black mark against them, don’t want their family life disrupted.   If you have to leave your job, do it quietly, get a good reference and move on.  Because most likely the state won’t help you, the Tribunal service is not fir for purpose, getting to cases in timescale that don’t stop the debtors moving in.  No body would blame you for moving on and turning you back a problem.

However if you believe you you have to say is right and couldn’t live with yourself in you did turn away.  Depending on how big you problem is, how big the company you work is you’ve got a big problem on your own shoulders and no one can take it away.  It might even kill you; or you kill yourself because the weight is too much.  This is the lot of the UK Whistleblower.

Personally I’ve got a Mouton to climb; with a defense company and the Ministry on my back; with seven months to go.  On my right I’m fight off my debt and trying to live on handouts, – the DWP just keep turning down my ESA (their appeal process takes years.) and on my left I’m fighting off the mortgage company – who are even now coming to get my house.

I could give up.  I’d have nothing to show for my fight; gained nothing – lost everything; and would have to fight back the bile for the rest of my life knowing that an important safety issue had never come to light.

For crying out loud I only want to live and according to my rights have a fair hearing at the Tribunal, then win or loss I can put my life back together and try to get my health back!

 


UK Tribunal Service Not Fit for purpose!

Nobody likes waiting but imagine putting your life on hold completely?

The UK Tribunal Service Not Fit for purpose!  If takes so long to wait, most case are never heard.  Settlement via ACAS or commercially are becoming the norm; with less and less cases being heard.

The is a loss for both the ‘user’ of the Tribunal service and the service itself.  The service itself uses the statute on the Employment Tribunals are tribunal non-departmental public bodies in England and Wales and Scotland which have statutory jurisdiction to hear disputes between employers and employees.

The most common disputes are concerned with unfair dismissal, redundancy payments and employment discrimination.  There are very few cases dealing with Protected disclosures; which is the only place such an act of disclosure can be heard – in relation to Employment only.

Most issues raised as Whistleblowing are in the press; rather than to the directed authority under the ‘Protected Disclosures Act’.

This leaves me, and I guess – due to the number of articles in the press, many others a low expectation of the Tribunal service; or disgust at the lack opportunity make a disclosure stick.  For instance if you made a disclosure (to an authority) as a citizen to a public body or company; there is no court or tribunal which while hear your ‘point of law’.

I sick of waiting, the wait is causing me immense pain – due to my ME and my depression.  But I couldn’t live with myself if I gave up or took the easy way out, such as – by blowing of steam to the press.   I do not what my ‘point of law’ or ‘subject of disclosure’ to be mudded or sullied by the misreading of the press.