Category Archives: ME

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 We are sorry to learn that you believe it to be outdated and inaccurate.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.

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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


Whistleblowing poet needs to keep alive Indiegogo project

Ambitious & passionate. I belive in truth. A whistleblower trapped in a cycle of disclosure & delay?

 

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Hello and thank you for reading. My name is Michael Wormald. I am British, starting off as a self-publisher and blogger.  I’m no longer in full time employment because I am a Whistleblower.  Making Protected Disclosures  regarding Airworthiness and contracting irregularities at major defence firm, it took courage to make this step – and even more to continue the fight.

This aside, I have been writing for many years now,  I’ve decided to release my stories and share my experiences to a wider audience.  I have my blogs:

https://likethisdont.wordpress.com/

http://thelonghardhighway.wordpress.com/

http://tcaofalstaffwild.wordpress.com/

And I have published one collection of romantic, fantastic, and inspiring poems; stories and moments from my past.  There is no context, other than my memory.

I continue to write and I continue to struggle to balance my condition Myalgic Encephalitis; and with stress, anxiety and depression caused by the Whistleblowing.

I have produced long, intricate and imaginative stories from a very young age, always having in mind the idea of becoming a writer.

I started work in the Communications; travelling all over the country visiting not only factories and offices but bank vaults, prisons, coal mines, army barracks, ships, rigs, and hospitals; before moving to Defence supporting the Royal Navy; working on Submarines and ships; and later the RAF.

Diagnosed with M.E. (Myalgic Encephalomyelitis), and a father of a young daughter and now a Whistleblower, – hoping to turn to writing fulltime.  However I am unable to support myself and fight the Tribunal and courts over the disclosures and loss of my job, and start writing at the same time.

I have a lot to share; I have the inspiration and ambition but I trapped by debt and the continuing delay of the courts.  For instance since the original date of my Tribunal in Janurary I have had to invest a most of time am healthy to Appeal paperwork.

I want to continue my blogs and marketing my work and complete research for my novels.

It is very difficult and frustrating self-publishing.  Poetry does never sells well, (unless the poet as died).

Preparation for the Tribunal has typically been 1500-2000 pages; an exhausting and costly process.  The Appeal process rolls on and on; draining my energy and resources.

Your contributions will help me make ends meet, keep on writing, and release blogs until I hear from the courts about my Appeals.

Donations allow me to dedicate all my time to writing, and all the other stuff related to get a foot hold self-publishing.

What I Need

You contributions to reach this target, if achieved I will be able pay the mortgage arrears.  Get food in the house to feed my daughter and myself so I can keep on fighting:

  •              Representing myself in court,
  •             And writing or marketing my work;

and hopefully finding success!

Other Ways You Can Help

I understand that people sometimes can’t afford to be charitable, if you cannot donate please keep passing on my appeal – or my blog links or my poetry:

http://www.amazon.co.uk/Michael-Wormald/e/B00FO…

But if you don’t have any money to contribute you can help out with a tweet or like. This is just as important and you only have to click on a button?

I will be inspired  – and full of gratitude for your time and kindness!

Thankee

Michael


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.

 

 

 


Letter to DWP Minster Regarding Tribunal from Myalgic Encephalomyelitis sufferer

A Minster for Employment (DWP)

Thank you for your letter

Unfortunately you have misunderstood the situation.  However you have clarified the need for me to ask this question at this time.

The DWP are failing to consider the validity of resistance to Appeals made by claimants.

I am retried on medical grounds (medical evidence accepted by two pension companies.)  I was diagnosed with ME/CFS in xxxx, my symptoms are worsening.  I stopped work in xxxx.  Have been signed unfit since xxxx; and referred to mental health services xxxx and cardiology xxxx due to increased stress.  I have been accepted for ESA from April 2013.

The DWP are still resisting (via the tribunal) my Appeal for ESA for 2012.  What the Upper Appeal have to prove (to itself since the DWP – according to you give no further instructions?) is that I was miraculously fit for some reason from April 2012 to April 2013? (based on a report that I complained was inaccurate?!) In the first year that my doctors declared me unfit?

They are to do this after the DWP admitted that it failed to deal with my complaint:

  • about the inaccuracy of the ATOS report;
  • the reply to which I only received after my first appeal.
  • you confirm that the ATOS report may not contain my statements. [Legally then it is of no use to anyone – verified with solicitor.]
  • you confirm that the advice given to the DWP and ATOS is from the Disability Handbook 1996?!  Well that is out of date the legal definition for ME (CFS) is from 2007, the Nightingale definition.

To avoid stress on me; and to stop wasting tax payer money:

  • The DWP should have advised the Tribunal that a complaint was in progress
  • The DWP should have advised the Tribunal the result of the complaint
  • The DWP should advise the Tribunal if it should proceed or not; based on the merit of the case and the seriousness of the complaint

Without an informed process the result of complaint and Tribunal are meaningless.

After all if the DWP made a mistake and discovered it would surely tell the Tribunal, in order that the claimant not become a victim of abuse by the DWP/Tribunal?

  1. Are the DWP going to waste my and the Tribunal times (and tax payers money) continuing to resist my Appeal?
  1. ZZZZ XXXX will be asked to consider investigating and raising the question in the House of Commons as to why Tribunals are left to run when there is no validity in the case; and why Tribunals are asked to resist appeal in all instances; this is not an independent or fair Tribunal?
  1. Under the Freedom of Information act I am requesting copies of all DWP instructions given to the Tribunal in my case. (Reference 1234xyz)
  1. Consider ‘Regulation 29’, if Tribunal failed to consider risk to mental and Physical health if the claimant were found not to have limited Capability for work.  Having failed to consider Regulation 29 the DWP are liable for the stress and injury caused to me.   This includes your failure to update the Tribunal with complaint status and medical evidence.
  1. Incorrect application of descriptors.  “It must be possible for all the descriptors to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity.”  You might be able to go up three steps *once* – but if cannot do it “reliably, repeatedly and safely”, in Fraud’s own words you CAN NOT do it at all.

I can’t repeat tasks due to my condition; but we also see that ATOS cannot repeat facts?

The Tribunal must be updated with the complaint details and outcome (including why it was late!)

Regards

***

After getting that together which has taken since last month – I’m exhausted!!  The stress I get from concentrating on fact and typing correctly gives me chest pains and panic attacks.

I intend to copy the letter from the DWP about the ATOS report very soon!  Keep reading!

Well thats over with for today.  Now to try and get it off my mind!


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