Myalgic Encephalomyelitis

Please help me.  There isn’t anywhere else to go?

wbtm@talktalk.net

Paypal : wbtm@talktalk.net

thanks

Whistleblowing poet needs to keep alive Indiegogo project

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

https://www.indiegogo.com/projects/whistleblowing-poet-needs-to-keep-alive/x/8151164

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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

***

Myalgic Encephalomyelitis or Encephalopathy; M.E.

formerly CFS (Chronic Fatigue Syndrome)

The Definitive Description of ME

MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]

The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of ‘feeling awful’. Many patients report the occurence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia. There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying ‘this patient’s problem does not come within my field’. Nevertheless, by this time the unfortunate patient has acquired the label of ‘neurosis’ or ‘personality disorder’ and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.

The too facile assumption that such an entity – despite a long series of cases extending over several decades – can be attributed to psychological stress is simply untenable. Although the aetiological factor or factors have yet to be established, there are good grounds for postulating that persistent virus infection could be responsible. It is fully accepted that viruses such as herpes simplex and varicella-zoster remain in the tissues from the time of the initial invasion and can be isolated from nerve ganglia post-mortem; to these may be added measles virus, the persistence of which is responsible for subacute sclerosing panencephalitis that may appear several years after the attack and there is a considerable body of circumstantial evidence associating the virus with multiple sclerosis. There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues. In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. It is fully established that these viruses are the aetiological agents of ‘Epidemic Myalgia’ or ‘Bornholm’s Disease’ and that, together with ECHO viruses, they comprise the commonest known virus invaders of the central nervous system. This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since eny generalised virus infection may be followed by a period of post-viral debility. Indeed, the particular invading microbial agent is probably not the most important factor. Recent work suggests that the key to the problem is likely to be found in the abnormal immunological response of the patient to the organism.

A second group of clinical features found in patients suffering from myalgic encephalomyelitis would seem to indicate circulatory disorder. Practically without exception they complain of coldness in the extremities and many are found to have abnormally low temperatures of 94 or 95 degrees F. In a few, these are accompanied by bouts of severe sweating even to the extent of waking during the night lying in a pool of water. A ghostly facial pallor is a well known phenomenom and this has often been detected by relatives some 30 minutes before the patient complains of being ill.

The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example ‘cold’ when they mean ‘hot’. Others find that they start a sentence but cannot complete it, while some others have difficulty compre- hending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenom. Emotional lability is often a feature in a person of previous stable person- ality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the ‘encephalitic’ component of the syndrome.

I would like to suggest that in all patients suffering from chronic debility for which a satisfactory explanation is not forthcoming a renewed and much closer appraisal of their symptoms should be made. This applies particularly to the dominant clinical feature of profound fatigue. While it is true that there is considerable variation in degree from one day to the next or from one time of the day to another, nevertheless in those patients whose dynamic or conscientious temperaments urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘take plenty of excercise’ the condition finally results in a state of constant exhaustion. This has been amply borne out by a series of painstaking and meticulous studies carried out by a consultant in physical medicine, himself an ME sufferer for 25 years. These show clearly that recovery of muscle power after exertion is unduly prolonged. After moderate excercise, from which a normal person would recover with nothing more than a good night’s rest, an ME patient will require at least 2 to 3 days while after more strenuous excercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case. The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right. Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles. In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles.

The clinical picture of myalgic encephalomyelitis has much in common with that of multiple sclerosis but, unlike the latter, the disease is not progressive and the prognosis should therefore be relatively good. However, this is largely dependent on the management of the patient in the early stages of the illness. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them. Any excessive physical or mental stress is likely to precipitate a relapse.

It can be said that a long-term research project into the cause of this disease has been launched and there are good grounds for believing that this will demonstrate beyond doubt that this condition is organically determined.

from:

http://www.meactionuk.org.uk/ramsey.html

http://www.meactionuk.org.uk/

++

Blog Post 28th  February

The UK and M.E.

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

Blog 1st March 2013

Myalgic Encephenilities and exercise.

I’ll tell you first that exercise as you currently think about it is impossible.  But I’ll also tell you some sort of exercise is vital.

This is a lot of duff advise about exercise and M.E. out there, don’t follow any advice until you understand your condition.  I’ll also say there’s a lot of duff diagnosis out there.  This advice is for people who have M.E., and have understood and accepted the diagnosis.  By accept I mean you have accepted the diagnosis and started to recognize and understand your limits.  This took me years.  I also understand that I did too much because I didn’t understand the disease – nor was I able to separate it or get any from the CF/S label.  Having done too much and tried too hard I did myself more harm than good.

If you have Chronics Fatigue get advice for the condition that is causing your particular fatigue.  If instance if you are recovering from an operation or cancer treatment – your fatigue is particular to you situation.  The label CFS doesn’t help; but there are experts out there for Chronic Fatigue who can tailor their advice.

For M.E. you will find that movement is either painful or difficult due to fatigue, numbness or pain.  If you don’t move however the pain will get worse and in the long you run you’ll do more harm to your body by not moving.

Set realistic limits and boundaries.  A simple thing is to say I will get up and stretch everyday.  Not always convenient, but if you set aside a slot of time for yourself then it is possible to do gentle stretching.  I find a hot bath helps; although these days I admit I’m to fatigue to bother with baths.  An hour after breakfast when your Brain is just beginning to kick in is a good time.

So what exercise do I do? None.  Not real exercise anyway; one day I might get there but not yet.

5 minutes is a sensible time limit.  I recently attended the EPP (Expert Patient Programme) which I was referred to by my doctor.  I’d recommend it, they can help you make the right choices.  So 5 minutes as the time limit – but you must also set a boundary.

On the EPC one patient had set the target of walking around the block once everyday.  She said this ‘should’ take her 5 minutes.  Good goal?  Wrong she didn’t consider how slowly she walked.  In fact it took an exhausting 25 minutes.

if you set yourself both a boundary and a limit you should be more comfortable.

“I aim to walk around the block; I will set a limit of 5 minutes and measure my progress by the number of lampposts.  If I canout achieve my aim today I will stop at the nearest lamppost and turn back.”

When you set out allow time for the outward and homeward journey.  1 lamppost and back first day; maybe two the next.  That’s 2.5 mins. out and 2.5 mins. back.  Goal for the day achieved – 5 minutes exercise!

Maybe the goal will change and stick at 5 lampposts as the limit (allow for the time limit – remember you might be slower the next day).  There is no rules against changing your goals; or adjusting them if you are unwell – or too busy with something else.  If you’ve had to drag yourself out shopping that’s more than 5 minutes activity – jobdone, no need for anymore, tick in the box and put the kettle on!

Oneday you might get half way round the block and instead of turning back – the quicker way home is forward.

To be honest I don’t even manage a walk out every day; I’ve let that goal slip.  But I do not beat myself up about it!  It all depends what life is throwing at you?  Personally I glad to be up and about.  Stretching at least once a day and keeping mobile around the house.

With M.E. any energy you should have isn’t there; what you have must be rationed.  But you must use it!  Staying immobile  too long could kill you.

My exercise for today is stretching; this Blog – warms up my brain (uses a mass of energy though!); then I have to use what is left to cope with life.  After dealing with the post and the anxiety it brings there’s nothing left, but at least I still moving!

You can also get some good advice from Physio or Pain Management.  They recommended Resistance Exercise Bands.  A sort of rubber sheet with graded strength – a great supplement to basic stretching; they have no weight but can be used to add some resistance and help build up or maintain strength. Resistance Exercise Bands

Image

Blog post March 1st

Getting Out of Bed (Myalgic Encephalomyelitis)

By Max

Getting out of Bed is always a pain.  This morning was the same.  Set an alarm – yeah yeah – the alarm goes off at 7 O’clock (Party Time) but that’s or more less only first warning – I rarely even remember getting up to switch it off.  8 O’clock alarm more like it – brain is thinking – get up take mediation; but I’m still sleeping come 10 O’clock.

It’s easy when you’re living with someone.  My daughter shouting to me; “Are you awake?”; “Can I go to the toilet”…  She’s a huge encouragement; generally to help dispel the normal doom which causes me to roll over and go to sleep when she’s not there.  A wife nagging you to get to work; or just the thought of it used to get me out the door – but hell, I remember stopping the car and going back to sleep for an hour on the way to work!

Let me explain.  One of the major symptoms of M.E. is muscle fatigue as if the energy you need isn’t there; which leads to pain; breathless; poor circulation – everything is running at 80% efficiency – you just not getting enough.   But the brain is thinking:- pain, anxiety, push harder, finish what you started, get up, get going, breath…  and then there’s what is called inappropriate adrenalin response…

That means that when you wanted to push, to get up, to do anything – nothing happens; and then later or when you want to relax bang… adrenalin.   This is relentless; try working when you need to – or sleeping when you should.  Pretty soon you really fatigued!

Doesn’t fatigue help you sleep?  Well, in a word no.  Because you can’t control it.  You are likely to be stressed by the end of the day, – because you achieved nothing or little that day or because you’ve already started thinking how you’re going to get up the next day.  Then there’s the physical pain; when it’s bad it warps around you when you lie there trying to sleep.

Getting relaxed, taking your mind of the day’s worries, stopping working or thinking an hour or so before bed is excellent advice.  I rarely achieve this state of mind.  I only wish life would let me?

Getting out of bed requires a number of things to be right.  Firstly you need to have had some refreshing sleep.  (1 in 100 chance of that if you have got life in order to try and stop the anxiety) but possible?

A glass of water immediately on rising; before the alarm is off and soon as you are on you’re feet.  Not bed sitting in bed – you’ll fall right back into the pit.  Oh, and put the alarm downstairs.  Drink the water, slosh and straight downstairs… switch of the alarm.

Hopefully both the rush of drinking the cold water; together with dash to alarm will have woken you enough to stand by the kettle and wait for it to boil; at least when it does – you’ll wake up? (without the glass water I’m back in bed and in a stupor before I know it!)

Next is up to you.  Set a few goals or things to do immediately.    It’s easy when you know the kids need breakfast, but on your own… you’ll fall asleep on the sofa.

I boil the kettle

Switch on the kids TV (not the news – you’ll end up channel hopping for 2 hours waiting for something interesting…)

Switch on the Computer

Then I follow them around:- make Coffee, log-on, put in toast, load Outlook, butter toast…  this way I’m moving and not sitting down backsliding towards sleep.  After I’ve eaten then allow myself to relax… but not sleep?

Getting Up M.E. Myalgic Encephenilities

From Dr. Slump. Volume One by the wonderful Akira Toryiyama! Helping us all keep a sense of humor!

I’ve struggled to get up for over twenty years; long before my diagnosis.  I know I’ve ruined parts of my life, or missed them altogether, – even slept in when I’ve got tickets to go places…  Without a solid routine to chase me around in the morning I sleep for the rest of the day.

 

May 2014

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

 

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.

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