Writing without coffee is possible; but after days two I become a sloth and lived under a duvet on the sofa for the rest of the week.
Category Archives: CFS
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 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.
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?
- Are the DWP going to waste my and the Tribunal times (and tax payers money) continuing to resist my Appeal?
- 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?
- Under the Freedom of Information act I am requesting copies of all DWP instructions given to the Tribunal in my case. (Reference 1234xyz)
- 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.
- 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!)
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!
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
I practice cradling love
in a stainless spoon
Haiku on Kindle
Reflection Haiku: Living Modern Lives the Simple Way – Lily Wang’s English and Chinese Zen Shorts
Night Fall (Haiku For The Evening Shade)
Intro to Haiku: An Anthology of Poems and Poets from Basho to Shiki
Haiku: This Other World
Kindle books from Michael Wormald
by Michael Wormald
Poetry, Haiku and reflections on the difficulties of living with ME.
Cheap sword hanging
By a good
Demands more attention
Inside neon bright
Outside moon full burns
Poem, ‘Dreams of Forgotten Love’, Extract:
Whispering echoes return from sleeping memory.
Sipping potions divine, drowning in forgotten loves glory.
Like the recognition of a long forgotten perfume,
Distant faces blotted; clear once more a bloom.
She is there lingering with lost affection,
The only light coming from re-surfaced emotion
Souls of dead poets, –
Seeking then resting like weary travelers,
In a fool’s paradise, unreal and decayed.
The forgotten flower of Love, withered without sunlight.
What’s the point of trying to keep it alive without light.
Like a never ending epitaph to a memory,
Your path has been too long and too hard to go back.
Leave your sour scars, forgive and forget yourself.
Fools gold to forgive all but yourself.
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:
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:
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!
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.