Tag Archives: M.E

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

Follow Michael J Wormald Publishing
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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 We are sorry to learn that you believe it to be outdated and inaccurate.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.


Within in minutes of my last post and commenting on the dissary the term ‘CFS’ leaves is in – I recived a link to the story below:

The Nightingale report told the House of Lord and Commons to stop using the term CFS.

“I have friends diagnosed with ‘ME/CFS’; who had been under long term stress and hence were fatigued… They never had any of the odd Neuroligical symptoms I have; nor ever saw a Neurologist. They are now better having rested! Wow a cure!? Not!

The water is muddied. Fatigue is not Encephalitis.

The NHS and medical community will acknowledge Encephalitis only when the infection is still raging – no consideration is given; no data is collected for scars and damage left by unobserved Encephalitis. M.E. has the same set of symptoms as surviours of chronic infection where Encephalitis was ‘by luck’ observed and treated at the time of infection that being – “characterized by several normal years (6–15 on average) following original infection and Encephalitis, and then gradual, progressive psychoneurological deterioration, consisting of personality change, seizures, myoclonus, ataxia, photosensitivity, ocular abnormalities, spasticity, general malaise, fatigue and coma.” Sounds familar to me?! ”  (end comments)

The case below there is a clear link made between the infection David suffered and his malise and decline.  It beggars belief that the diagnosis was ME/CFS instead of Encephalitis or Acute disseminated encephalomyelitis.  If his symptoms were properly diagnosed he would have been scanned and the Brain damage spotted.

I am disgusted at the treatment David got in Germany.  Sadly the NHS in the UK is no different!

 

David’s Story:

David’s mother, who wished to remain anonymous, sent me her son’s story a few days ago after I asked for photos of people who had died of ME/CFS. She hopes that when people learn of David’s horrendous experience some progress will be made toward helping patients with ME/CFS, and that David’s suffering will not have been in vain.

It is not easy to tell David’s story.

In February of 2011, at the age of 15 ½, David had an acute infection with fever, along with inflamed, suppurating tonsils. He took antibiotics, the fever went down, and everything seemed to go back to normal. Shortly afterwards he developed back pain. He had been working very hard in his garden, carrying heavy stones. This seemed the reason for his back pain.

The following months he seemed to be functioning, but afterwards we realized that he was suffering quietly. None of us knew about his sleep disturbance, because he never complained. He only told me about the pain, so he was seen by orthopedic doctors. But we didn’t understand why no treatment seemed to really help. At the end of summer vacation 2011, he told me one evening that he was not sure if he could manage school. I thought these were strange words from our son, who was very diligent regarding school.

By the beginning of October he was no longer able to attend school. He could barely move and lay in bed like a statue.

After a few days our family doctor referred him to a children’s hospital. They did many tests for orthopedic and rheumatic illnesses – there was no result. That was where David heard for the first time: ‘It is no wonder you feel so bad, if you don’t move at all…’ The hospital’s psychologists said it could be ‘all in his head’…

After 10 days of no test results and no progress, we took David back home.

At home, he got physiotherapy for his back, but now he seemed to develop strange sensitivities and odd explanations for his bones and joints hurting – a fact that augmented the impression that it was ‘all in his head’.

Our family practitioner was very concerned about the fact that he was at home, and ‘nothing was happening’ while David was getting more and more ill. In October he could walk the 2 km to the physiotherapy office, but by December this was no longer possible, and nobody could understand why. He lost weight although he ate as much as he could – and that was really a lot! – but he hardly moved.

To make the following months short: There were no positive results from any test, and every absent finding made the impression stronger that there was something very wrong in his head. Only we, his parents, said, “We’ve known him for 16 years now, and there is something not right with the explanation that his symptoms are only signs of major depression or somatoform disorder.”

The only measureable outcome was a very high NSE [serum neuron-specific enolase] in December, but after an intense search for neuroblastoma – with no confirmation – the value was declared as a laboratory mistake.

We lost confidence in our family practitioner, but had no alternative. She urged us to go to the psychiatric hospital. We believe she did this to free her of the responsibility she felt for the situation. She was not willing to order the tests we requested, such as testing epinephrine levels. Her reaction was “Yes, we could do this at some point, but NOW it is the time to ask a psychiatrist…”  That told us that she had already made a psychiatric diagnosis. We felt that there was something wrong with this, but we had no clue what the heck our son was suffering from. We kept searching for help, and I found a way to test his epinephrine levels as he was at home (not so easy if you have no doctor), but the results took weeks.

During that time we took David to a psychiatric hospital with very heavy hearts, but our question there was, “We don’t know what he is suffering from. Can you help him?”

After one week, we got the answer: “He has no major depression, he also has no incipient psychosis (as one doctor assumed weeks before). We don’t know what he has. But NOW we have to get him moving, because activity is the most urgent thing he needs.”

While he was in the psychiatric hospital, David got worse and worse. He got no help or attention for his physical needs. His oversensitivity to sound was very acute at this time but they made no compensation for this. He was traumatized.

In the second week of his time there, we got the results of the epinephrine test he had taken weeks before. All his hormones were very, very low, nearly alarmingly low. We showed the results to the doctors and asked for follow-up, or for more testing. The answer was that the tests were designed for detecting an overproduction of these hormones, so these results are meaningless. A few days later, David was taken to the locked ward.

With the knowledge we have now, and from our experiences over the following months, we now realize it was a miracle that we managed to get him out of the locked ward. Our reason was that we wanted to try to figure out what was happening to David with an endocrinologist. (But I will never understand why it was impossible to ask the endocrinologist at the hospital for advice?! David was in a university hospital, and all the specialists were right there!)

After 2 1/2 weeks in psychiatry David could no longer walk more than a few steps, so we had to lay him down in our car, because he could not sit for the 1 1/2 hour trip. He never recovered to the level he had been before being admitted to the psychiatric ward.

I had made an appointment with an internist who was a specialist in epinephrine problems a few days after David came home with us. It was he who diagnosed David with ME/CFS. At first the diagnosis was only a hunch, but time proved him right. Nine months after David was forced to leave school we finally had a diagnosis –  of something I never had heard of before. 

The following months David got slowly, but steadily worse. Mainly his oversensitivity grew. From December 12 until February 13 he was in a poor, but stable condition, so we gained hope for things getting better, we thought we reached the bottom of the valley.

Then, in the middle of February, he crashed in a way we could not imagine before. Each week, almost every day a new low point was reached.

One morning in the last week of March, my husband heard a strange noise and went to see what was going on. He found David on the floor, unable to move, in terrible pain. But he was conscious, recognized his father, and was able to speak.

David was brought to the ER, where they found a large brain hemorrhage. They couldn’t stop the bleeding, and after some hours, a second brain hemorrhage was found. They transferred him to a hospital with a neurosurgery unit.

He died 28 hours later without regaining consciousness. His father and I were with him until the end. His brothers and sister came this last day and said goodbye to him.

None of the medical professionals we met in his last two days ever heard of an illness called ME/CFS or was familiar with the symptoms David had.

Three weeks after David’s death, I went to a meeting of ME/CFS patients and care givers. This meeting was my first contact to patient groups – before that we didn’t have the time, the strength or the knowledge about what was possible.
 
David’s parents wrote the following letter to the health minister of Rheinland-Pfalz
 
Dear Health Minister,
 
Three weeks ago we lost our 17- year old son David. He died after two days at the intensive care unit as a result of an unstoppable brain hemorrhage.
 
Before his illness he was a normal teenager with no problems at school. He played cello for 10 years, planted his garden with devotion, cared for his birds, had a passion for chemistry and biology, and never knew a minute of boredom.
 
A year and a half ago he had become so seriously ill that he couldn’t attend at school anymore. Nine months ago, after a long odyssey, he was diagnosed with ME/CFS.

The last months of his life he was so ill that he couldn’t bear any sound, or the presence of other people. He couldn’t handle intellectual information. Daily life was nearly impossible for us and his siblings, because all of us knew that every sound gave him unimaginable pain.
 
In the last two days of his life, many clinicians cared for David: First aid helpers, ambulance crew, emergency doctors, intensive care unit crew, neurosurgery OP-team, and a further anesthesiologists and neurosurgery intensive care unit crew – not one single person of all these experienced and well-prepared people had heard about an illness named ME/CFS before.
 
Our dream is that in the future no ME/CFS-patient has to face the situation where the ambulance crew needs to spell the name of this illness into his walkie-talkie.

And that no seriously ill child have to wait nine months for a diagnosis, during which all treatment attempts worsen his symptoms, as took place with David.

And that parents, who have the unsolvable task to care for a seriously ill ME/CFS-patient are not threatened with the withdrawal of custody and don’t get letters from the government office for youth welfare.

They need help, support and empathy, and in very hard times the chance to get care for patients outside of their homes.

In the whole of Germany there is no means for meeting the special needs of patients with severe ME/CFS.
 
It is our dream that this fact will be changed.
 
If David’s pain and our loss will change something, then we will be glad and thankful.

Please do all you can to make this happen!
 
Thank you.

End quote

http://www.prohealth.com/library/showarticle.cfm?utm_source=twitter&utm_campaign=twitter_article&LIBID=18932


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

 

 


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!