WHAT IS M.E

M.E: A Guide

This is a guide designed for people who know someone living with M.E. It is intended to offer brief information and does not constitute or replace medical advice.

M.E. Facts and Figures

What is M.E?

M.E. is an illness. M.E. stands for Myalgic Encephalomyeltis / Encephalopathy – which is a bit of a mouthful, but basically means muscle (‘myalgic’) and head (‘encephalitic’) symptoms. M.E. is also known as Chronic Fatigue Syndrome (CFS) or Post-Viral Fatigue Syndrome (PVFS). The condition is known by other names elsewhere in the world; in the US for instance, it’s called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

It affects people in a variety of ways, with common symptoms including fatigue, cognitive problems, memory loss, aches and pains, dietary and digestive problems

How does M.E. start?

Often, M.E. will start after an ordinary viral infection – flu, chicken pox, glandular fever, even a cold. It is possible for an apparently healthy person to come down with a viral infection, and develop full-blown M.E. immediately. In other cases, there may be no obvious viral ‘trigger’ at all and the person may ‘slide’ into the illness over a period of months or even years. Older people tend to develop M.E. in this way.

What causes M.E?

It is not known, but there is good evidence that certain infections can trigger M.E. such as a viral infection (glandular fever, viral meningitis, viral hepatitis) or ordinary flu-like infections. M.E. is generally thought to be caused by a combination of factors.

Is M.E. a ‘new condition’?

M.E. has been around – under different names – for at least a century. It was probably seen before then, but perhaps in far fewer people. So it isn’t a ‘new’ condition – but rather a newly recognised condition – and probably much more common. In 2002 the government gave formal recognition to the illness.

How many people suffer from M.E?

There are no statistics on the number of people suffering from M.E, but it is estimated that 240,000 people suffer in this country at any given time, of which approximately 25,000 are children.

What kind of people suffer from M.E?

M.E. strikes people of all ages (including very young children and very old people), all social classes and all ethnic origins. There does seem to be more women than men with M.E, and the reasons for this are not known. One thing that is true of the vast majority of people with M.E, is that they want to get better. The idea that people with this illness somehow ‘want to be ill’, or that they are ‘malingering’ is absolute nonsense. Most of them had an active, enjoyable lifestyle before becoming ill, and would like nothing more than to return to it.

How long does M.E. last?

Many people experience a period of what is known as ‘post-viral debility’ – after having flu, for instance. This may feature many of the symptoms of M.E, but rarely lasts more than a few weeks. In a minority of cases it may last longer, and it is generally agreed that if it lasts longer than six months and the symptoms correspond, then it may be considered to be M.E.

M.E. can last anything from a few months to (in some unfortunate cases) decades. Statistics show that twenty percent of people suffering from M.E. make a fairly complete recovery within one year. Sixty percent make a partial recovery in three to four years and twenty percent seem not to recover, though they may regain a better quality of life than when they first became ill. Sadly some become severely affected and are bed or housebound.

Treatment and recovery

As yet, there is no cure for M.E. It is a long term chronic illness which can last for many years. Many people go on to make a full recovery and many more make significant progress. An important fact in recovery is pacing and managing the condition. This can help with quality of life as well as with recovery. It is vital that the person does not do too much and rests when necessary. This can mean an extended break from work, university or school.

Why is M.E. so controversial?

There are a number of reasons for this:

- There is such a variety of symptoms involved in M.E, making it a difficult condition to define clearly and some doctors find it a problematic condition to diagnose.

- There are no clear tests to diagnose M.E. – it has to be diagnosed by doctors using ‘clinical judgment’ – i.e. listening to the patient’s description of their symptoms and by an elimination of all other possibilities. It is difficult and time consuming to reach a diagnosis. Doctors sometimes appear unwilling – or unable – to do this.

- The main ‘evidence-based’ medical treatments are Cognitive Behavioural Therapy and Graded Exercise Therapy, however these are not effective for all people and often the patient themselves is the expert on the illness.

- Some of the symptoms of M.E. overlap with illnesses that doctors label as ‘psychiatric’ disorders, so M.E. has tended to be lumped in with these conditions in the past.

What is M.E. like?

There are many symptoms of M.E. Not every person with M.E. will have all of them, and severity and intensity vary between people.

Fatigue symptoms

One symptom common to all people suffering from M.E. is an overriding and debilitating fatigue. This does not just mean ‘tired all the time’. The intensity of the fatigue varies, sometimes depending on the time of day and often depending on what the person has done. Many people describe it as like a plug being pulled or a battery running out. The fatigue felt is often overwhelming and is a type of exhaustion that is physically painful for the person living with M.E.

Unlike in many other illnesses, exercise may make things worse. Any physical activity – even walking up or down stairs – may put some people with M.E. in bed for days or weeks, and even cause a major relapse. Sometimes, you will see people with M.E. apparently able to do quite normal things physically, yet complaining of terrible fatigue and muscle problems. What you haven’t seen is the price they pay afterwards for their physical exertion – perhaps days in bed recovering. Some people have learnt how to ‘save up’ energy to enable them to do things, knowing exactly how much they can do – and what price they are likely to have to pay afterwards.

Often this fatigue means that the person will have to stop what they are doing immediately in order to rest. It is important to remember that the thing they are doing could be as apparently un-energetic as talking to you. Try not to get upset or angry when someone says they are too exhausted to talk with you – they really are too tired.

Cognitive functioning

Cognitive functioning, or thinking, attention and memory, are often affected in CFS/ME. One very frustrating symptom is ‘brain fog’. This feels a bit like having a head full of cotton wool or fog. Often, someone with M.E. is unable to concentrate for any length of time (a combination of brain fog and fatigue). Sometimes just reading or watching TV is too much attention-wise. Thus they may seem uninterested or not paying attention in conversation.Try not to get angry when this happens – it may be frustrating not to feel listened to, but imagine how frustrating it is not to be able to listen.

Memory loss

Memory can be adversely affected. People with M.E. have difficulty transferring things from short term memory to long term memory. They will often forget things you have just told them and will find it hard to take in new information – especially if it’s complicated. These problems will tend to be worse the more exhausted the person is, and the mental exertion, as well as physical, may itself be exhausting for people with M.E.

Making and keeping lists is extremely helpful, although sometimes it can even be hard to remember to write lists! It is very important to remain patient with a forgetful person suffering from M.E, they are not doing it on purpose and it does not mean that what they have forgotten is not important to them.

Aches and pains

There are many physical symptoms of M.E. As well as the overwhelming fatigue, there is usually pain in the muscles or joints. This pain can be extremely uncomfortable and very difficult to treat. The pain may not be relieved by normal methods like aspirin or paracetamol. Many people also have very bad headaches. Again, these can be very difficult to relieve. Finding a comfortable sitting or lying position can help. For example raising the legs using cushions.

Diet and digestive problems

There can be digestion problems, so the person suffering from M.E. may lose or gain weight. The digestive problems are often similar to Irritable Bowel Syndrome. Some people find that they develop food intolerances. For example, most people find that they are intolerant to alcohol. These are not allergies as such but can be just as disruptive and distressing. Eating the food to which the person is intolerant can produce a severe deterioration in symptoms. It is very important to respect the dietary needs of the person and not put them down as being a ‘fussy eater’.

Depression and emotional problems are often an effect of living with M.E, but it is important to realise that these are symptoms of the illness and not its cause.

Remember to be patient with someone who is appearing angry, anxious or depressed. This may be due to the illness affecting the nervous system or frustration from living with a chronic illness.

These are not the only symptoms experienced with M.E: people will often feel ‘ill all over’ and experience many flu-like symptoms: nausea, shivering, fever and aching joints. They may feel the cold very readily and generally over-react to heat and cold. Some unfortunate sufferers may be in constant, unremitting pain.

How ill are people with M.E?

Like any other illness, M.E. affects everyone differently and some are more affected than others. The most severely affected people are completely bedridden, in constant pain and unable to attend to normal bodily functions. Others may be in wheelchairs most of the time, occasionally accumulating enough energy to leave their wheelchairs for a short while. Those who are quite mildly affected may still be working full time – and appear pretty normal – but may be having to rest up every evening and weekend just to maintain their energy levels at work. Even quite severely affected people may look healthy when you see them, but they will pay a price later.

M.E. is a very variable illness – it does tend to follow a course of ‘relapse and remit’ and it may vary from week to week, day to day, or even hour to hour. So don’t be surprised if one week a person with M.E. is ‘up’ and doing normal things, and the next they’re in bed most of the time.

Understanding a Person with M.E.

The importance of belief

Over the years, M.E. has been called many derogatory things. It has also been suggested that it is not a ‘real’ illness, that people suffering from it should just ‘pull their socks up’. Attitudes like this are not only unhelpful, they can be very cruel to the person suffering from M.E. For many years people with M.E. have not been listened to, a situation which is thankfully now changing. So first and foremost it is important to BELIEVE the person. M.E. is a very real and distressing condition. People with M.E. do not want to be ill; unable to do all the things they normally enjoy doing. They want to be well and active and it can be enormously distressing to be unable to live a normal life.

How should I support a person with M.E?

The most important thing to remember is that people with M.E. get very tired and it may be disastrous for them not to rest when they need to and for as long as they need to. Also, ‘normal’ activities like conversations, which require very little energy from a healthy person, may be very exhausting for someone with M.E.

If a person with M.E. tells you they have to rest, or they cannot carry on talking to you, or they want you to leave, respect their need. It may seem selfish, but be assured – it is absolutely necessary.

Similarly, if a person tells you they are not physically capable of doing something (e.g. walking to the corner shop) – believe them. What they may mean is that they might be able to do whatever it is, but know that they will suffer for it afterwards.

Sometimes, somebody with M.E. may not seem to be taking in what you are saying to them - this is a problem with concentration and memory. They are symptoms of the illness and will vary according to how ill the person is feeling, and how exhausted they are. Slow down your conversation, and if necessary say or explain things to the person a second time.

If you ask a person with M.E. to do something or to be somewhere at a specific time make sure that they write it all down, as they may make commitments and then be struck with a bad bout of ‘M.E. memory’ and forget all about them! They won’t feel offended if you remind them. Above all, be patient, understanding and helpful to their needs.

Ask questions and listen

The best person to tell you how they are feeling and which symptoms they are suffering from is the person living with M.E. It can be very hard to describe how it feels to have M.E. to those who do not have it. Many people find that the description of it feeling like bad flu without catarrh symptoms is a good starting point. The most important thing is to listen to and believe the person. And of course, be sympathetic.

Dr. Jay Goldstein's Symptom

Checklist

One thing to understand about ME is that, while many people experience some of these symptoms at one time or another, ME sufferers experience most of these symptoms on a daily basis, with impacts ranging from moderate to severe for each one. Cumulatively, the effects are devastating.

The numbers in parentheses are the percentage of CFIDS patients who experience those symptoms.


1. Fatigue (100%) - usually made worse by physical exertion

2. Cognitive function problems (80%)

  • attention deficit disorder
  • calculation difficulties
  • memory disturbance
  • spatial disorientation
  • frequently saying the wrong word 

3. Psychological problems (80%)

  • depression
  • anxiety
  • personality changes, usually a worsening of a previously mild tendency
  • emotional lability (mood swings)
  • psychosis (1%) 

4. Other nervous system problems (100%)

  • sleep disturbance
  • headaches
  • changes in visual acuity
  • seizures
  • numb or tingling feelings
  • disequilibrium
  • lightheadedness - feeling "spaced out"
  • frequent and unusual nightmares
  • difficulty moving your tongue to speak
  • ringing in ears
  • paralysis
  • severe muscle weakness
  • blackouts
  • intolerance of bright lights
  • intolerance of alcohol
  • alteration of taste, smell, hearing
  • non-restorative sleep
  • decreased libido
  • twitching muscles ("benign fasciculations")

1. Recurrent flu-like illnesses (75%) - often with chronic sore throat

2. Painful lymph nodes - especially on sides of neck and under the arms(60%)

3. Severe nasal and other allergies - often worsening of previous mild problems (40%)

4. Weight changes - usually gain (70%)

5. Muscle and joint aches with tender "trigger points" or Fibromyalgia(65%)

6. Abdominal pain, diarrhea, nausea, intestinal gas - "irritable bowel syndrome (50%)

7. Low grade fevers or feeling hot often (70%)

8. Night sweats (40%)

9. Heart palpitations (40%)

10. Severe premenstrual syndrome - PMS (70% of women)

11. Rash of herpes simplex or shingles (20%)

12. Uncomfortable or recurrent urination - pain in prostate (20%)

13. Other symptoms:

  • rashes
  • hair loss
  • impotence
  • chest pain
  • dry eyes and mouth
  • cough
  • TMJ syndrome
  • mitral valve prolapse
  • frequent canker sores
  • cold hands and feet
  • serious rhythm disturbances of the heart
  • carpal tunnel syndrome
  • pyriform muscle syndrome causing sciatica
  • thyroid inflammation
  • various cancers (a rare occurrence)
  • periodontal (gum) disease
  • endometriosis
  • easily getting out of breath ("dyspnea on exertion")
  • symptoms worsened by extremes of temperature
  • multiple sensitivities to medicines, food and other substances

A Hummingbirds' Guide

Copyright © by Jodi Bassett 2004

This summarised version of the text updated March 2009

Taken from www.ahummingbirdsguide.com

Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3. M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). M.E. can be extremely severe and disabling and in some cases the disease is fatal.

Is Myalgic Encephalomyelitis a new illness? No. The illness has been documented as an organic (physical) neurological disease for centuries. The name M.E. was coined in 1956 in the UK.

Myalgic Encephalomyelitis has nothing to do with ‘fatigue’ M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of ‘chronic fatigue.’ Fatigue is not a defining (or even essential) symptom of M.E. M.E. and ‘CFS’ are not at all the same thing.

So why do some groups claim that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are synonymous terms? This new name and case definition of ‘CFS’ was created in the US by a board of 18 members, few of which had either looked at an epidemic of M.E. or examined any patients with the illness. Why? Money. There was an enormous rise in the reported incidence of M.E. in the late 1970s and 1980s, alarming medical insurance companies in the US. So it was at this time that certain psychiatrists and others involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify the severely incapacitating and discrete neurological disorder known as M.E. as a psychological or ‘personality’ disorder, in order to side-step the financial responsibility of so many new claims.

As Professor Hooper explains: ‘A political decision was taken to rename M.E. as “CFS”, the cardinal feature of which was to be chronic or on going “fatigue”, a symptom so universal that any insurance claim based on “tiredness” could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored.’

Public, medical and governmental understanding of M.E. is huge mess, that is for certain – but it is not an accidental mess, that is for certain too. (See: Who benefits from 'CFS' and 'ME/CFS'?)

What does a diagnosis of ‘CFS’ actually mean?All each of the flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitis, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis.

What is Myalgic Encephalomyelitis? What is its symptomatology? M.E. is characterised primarily by damage to the central nervous system (the brain) – initiated by an enteroviral infection – which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis.

M.E. symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. These symptoms are exacerbated by certain levels of physical and cognitive activity, sensory input and orthostatic stress. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death. Symptoms of M.E. include:

Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, hair loss, nausea, vomiting, vertigo, cardiac arrhythmia, orthostatic tachycardia, orthostatic fainting or faintness, photophobia and other visual and neurological disturbances, hyperacusis, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing,, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time breathing difficulties, emotional lability and sleep disorders. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), to read, write or to do basic mathematics; as well as problems with memory including; difficulty making new memories and recalling formed memories and difficulties with visual and verbal recall.

What does cause Myalgic Encephalomyelitis? Are there outbreaks? There is a history of recorded outbreaks going back to 1934, a review of early outbreaks found that clinical symptoms were consistent in over 60 recorded epidemics of M.E. spread all over the world. M.E. is an acutely acquired neurological illness (with systemic effects) initiated by a virus infection with a 4-7 day incubation period. This point of view is supported by history, incidence, symptoms, similarities with other viral illnesses and a large body of research spanning decades.

So what do we know about Myalgic Encephalomyelitis so far? There is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems. Many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. More than a thousand good articles now support the basic premise of M.E. Whilst it is true that there is as yet no single laboratory test which can diagnose M.E., there are a specific series of tests which enable a M.E. diagnosis to be easily confirmed (MRI and SPECT scans of the brain for example).

Some of the abnormalities found in M.E. patients include: extremely low circulating blood volume (up to an astounding 50%), enzyme pathway disruptions, punctate lesions in M.E. brains resembling those of multiple sclerosis patients, sub-optimal cardiac function and abnormal cardiovascular responses, persistent viral infection in the heart, severe mitochondrial defects and significantly reduced lung functioning. Strong evidence also exists to show that (even mild or moderate) exercise can have extremely harmful effects on M.E. patients; permanent damage may be caused, as well as disease progression and there have also been deaths. This is why the exercise programs being ‘recommended’ or sometimes forced on M.E. patients (including young children) to treat their supposed ‘chronic fatigue’ are so dangerous and harmful as to amount to legalised torture. Patient accounts of leaving exercise programs much more severely ill than when they began them (wheelchair-bound or bed-bound or needing intensive care) are common. Sudden deaths have also been reported in M.E. patients following exercise.

How common is Myalgic Encephalomyelitis and who gets it? M.E. has a similar strike rate to multiple sclerosis. M.E. affects more than a million children as young as five, teenagers and adults. It affects all races and socio-economic groups, and has been diagnosed all over the world.

Recovery from and severity of Myalgic Encephalomyelitis M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. It can also be fatal. Patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis.

M.E. is a life-long disability where relapse is always possible. Symptoms are extremely severe for around 30% of sufferers leaving many of them housebound, bedbound and severely disabled. One specialist found that M.E. patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest.

Truly M.E. can be one of the most devastating and horrific illness there is, yet many with M.E. are subject to repeated medical abuse and neglect because of the way the illness has been dishonestly ‘marketed’ to the public as being psychological or ‘behavioural,’ or as being a problem of mere ‘fatigue’ or a ‘fatigue syndrome.’

Sub-grouping or refining or renaming ’CFS’ will only waste another 20 years. There is no such distinct disease/s as ‘CFS’ – that is the entire issue. For the benefit of all the patient groups involved; the bogus disease category of ‘CFS’ must be abandoned and patients with M.E. must again be diagnosed with M.E. and treated for M.E. Due to an overwhelming amount of compelling scientific evidence, the World Health Organization correctly classified M.E. as a distinct organic neurological disease in 1969 – this classification/definition and name must be accepted and adhered to in all official documentations and government policy.

PLEASE help to spread the truth about Myalgic Encephalomyelitis. This appalling abuse and neglect of so many severely ill and vulnerable people on such an industrial scale is inhuman and has already gone on for far too long. This will only change through education. People with M.E. desperately need your help.

Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration. Please redistribute this text widely.

References

All of the information concerning Myalgic Encephalomyelitis on this website is fully referenced and has been compiled using the highest quality resources available, produced by the world's leading M.E. experts. More experienced and more knowledgeable M.E. experts than these – Dr Byron Hyde and Dr. Elizabeth Dowsett in particular – do not exist. Between Dr Byron Hyde and Dr. Elizabeth Dowsett, and their mentors the late Dr John Richardson and Dr Melvin Ramsay (respectively), these four doctors have been involved with M.E. research and M.E. patients for well over 100 years collectively, from the 1950s to the present day. Between them they have examined more than 15 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E., and books (or chapters in books) on M.E. Again, more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist.

This paper is merely intended to provide a brief summary of some of the most important facts of M.E. It has been created – by a well-read layperson purely for the benefit of those people without the time, inclination or ability to read each of these far more detailed and lengthy references created by the world’s leading M.E. experts. The original documents used to create this paper are essential additional reading however for any physician (or anyone else) with a real interest in Myalgic Encephalomyelitis: see What is M.E.? or the References page. A partial reference list follows:

  • Dowsett, Elizabeth MBChB. 2001a, THE LATE EFFECTS OF ME [Online], Available: http://www.ahummingbirdsguide.com/wdowsett.htm
  • Hyde, Byron M.D. & Anil Jain M.D. 1992, Clinical Observations of Central Nervous System Dysfunction in Post Infectious, Acute Onset M.E. in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa, pp. 38-65.
  • Hyde, Byron M.D. 2007, The Nightingale Definition of Myalgic Encephalomyelitis [Online], Available: http://www.ahummingbirdsguide.com/whydepapers.htm#121947255

“People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.’  Professor Hooper 2003 


‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance’ Dr Byron Hyde 2006 

The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination. Professor Malcolm Hooper 2006

M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile. .Dr Elizabeth Dowsett

M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis. Dr Byron Hyde 2006

Dr Melvin Ramsay on Myalgic Encephalomyelitis: "The degree of physical incapacity varies greatly, but the [level of severity] 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."

The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments. There must be a proper recognition that these subverted processes have worked greatly to the disadvantage of people suffering from a major organic illness that requires essential support of which the easiest to provide is financial. The poverty and isolation to which many people have been reduced by ME is a scandal and obscenity. Professor Malcolm Hooper 2006

‘Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything’ Dr Byron Hyde 2003

Copyright © by Jodi Bassett January 2009

This version updated March 2009

Taken from www.ahummingbirdsguide.

 

 

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and polio (poliomyelitis). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’
  • Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This is always damaged in M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.  This neurological damage has been confirmed in autopsies of M.E. patients.
  • Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct organic neurological disease with the ICD code G.93.3.
  • Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.
  • Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.
  • Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.
  • Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
         However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
         This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
         If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.
    M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.
  • Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.
  • Myalgic Encephalomyelitis is a long-term/lifelong neurological disease that affects more than a million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)

For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is Myalgic Encephalomyelitis? Extra extended version. Permission is given for this unedited document to be freely redistributed, please redistribute this text widely.

The Clinical Features of Myalgic Encephalomyelitis

Melvin Ramsay, M.D., 1986

In the textbook, Ramsay began with the symptoms of the disease at its onset, then followed with the symptoms of chronic M.E. However, since most patients are unaware of the disease at onset, I have begun with the chronic symptoms. The symptoms of the onset of the disease follow - in case the reader is interested in how it begins, or in case the reader suspects there is a new cluster outbreak. There used to be cluster outbreaks; there is no reason (except for ignorance of the disease) why cluster outbreaks aren't recognized today.


[Disease in chronic state]
Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in three groups.

  1. Muscle phenomena
    • [Fatiguability]: Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.
    • [Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness….
    • [Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoevres such as turning a key in a lock or taking the cork of a bottle.
  • Circulatory impairment. Most cases of ME complain of
  • Cerebral dysfunction
  • Cold extremities and
  • Hypersensitivity to climactic change . . .
  • Ashen-grey facial pallor, some twenty or thirty minutes before the Patient complains of feeling ill
  • The cardinal features:
  • Impairment of memory
  • Impairment of powers of concentration and
  • Emotional lability
  • [Other] common deviations from normal cerebral function:
  • Failure to recall recent or past events,
  • Difficulty in completing a line of thought . . .
  • Becoming tongue-tied in the middle of a sentence, and a
  • Strong inclination to use wrong words, saying “door” when they mean “table” or “hot” when they mean “cold” . . .
  • Complete inability to comprehend a paragraph even after re-reading it
  • Bouts of uncontrollable weeping . . .
  • Alterations of sleep rhythm or vivid dreams, or both . . .

Accompanying features that can only be attributed to involvement of the
Autonomic nervous system:

    • Frequency of micturition (urination)
    • Hyperacusis (hypersensitivity to noise)
    • Episodic sweating
    • Orthostatic tachycardia . . .

Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis.

An alarming tendency to become chronic. [Added in the 2nd edition, 1988]

The onset of the disease is similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.

Instead of an uneventful recovery the patient is dogged by:

      • Persistent and profound fatigue accompanied by a medley of symptoms such as
      • Headache
      • Giddiness
      • Muscle pain, cramps, or twitchings
      • Muscle tenderness and weakness
      • Paraesthesiae [numbness or tingling in the extremeties]
      • Frequency of micturition [urination]
      • Blurred vision and/or diplopia [double vision]
      • Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing]
      • Tinnitus [constant sound in the ears], and a
      • General sense of “feeling awful.”

Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia …

All cases run a low-grade pyrexia (fever), seldom exceeding 100°F (c. 38°C) and usually subsiding within a week.

A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.


[A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988). Ramsay died in 1990. 

Canadian Guideline

http://www.mefmaction.net/documents/me_overview.pdf

The National ME/FM Action Network of Canada spearheaded the drive for the development of an expert consensus document for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In response to increasing numbers of patients inquiring about doctors knowledgeable about ME/CFS, the Network sent a questionnaire to doctors across Canada asking what items would be most helpful in assisting them with their ME/CFS patients. The physicians concurred that a clinical definition, as well as diagnostic and treatment protocols were of prime importance.

NICE GUIDELINES FOR M.E./CFS

http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf

There is a lack of epidemiological data for the UK, so population estimates are based on extrapolations from other countries. Overall, evidence suggests a population prevalence of at least 0.2–0.4%. This means that a general practice with 10,000 patients is likely to include up to 40 people with CFS/ME;half of these people will need input from specialist services. Many different potential aetiologies for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME.