Thursday, 12 July 2012

What is M.E.?

I've been asked to start sending my blog posts to my mother, by her boyfriend. This is an interesting opportunity since she does not believe I am ill. In pondering to myself which posts to send her I have realised that for all I have written I don't think I have ever actually explained what M.E. is. As such, I endeavour to do so today. I will also have the interesting task of explaining to her (someone who has never used a computer in her life) what a blog is. My mother does not read or listen to what you say; she reads between the lines, making up her own version. For this reason, this post may be a little odd, as I will be trying to leave no leeway for her to change my meanings.

So, what is M.E.?

Many doctors are under the outdated preconception that M.E. is a psychological condition, that sufferers choose to be ill and make themselves more and more ill through their neuroses about illness. This is not the case. If it were the case sufferers would not be reporting symptoms within the same range.

The World Health Organisation (WHO) and the National Institute for Health and Clinical Excellence (NICE) recognise M.E. to be a neurological condition. This means that it is a condition of the nervous system; the brain and the spinal column. It is physiological rather than regarding emotions and thoughts.

Anecdotal epidemiological evidence shows that M.E. seems to appear in clusters. Such evidence is difficult to gather however, since M.E. seems to be a condition that develops years after it is originally contracted. M.E. often appears to run in families. This may well be due to clustering though, rather than proving it to be a hereditary condition.

As yet, there is no definitive answer as to exactly what M.E. is. There have been various suggestions over the years. Most recently a study showed that it is likely to be linked to the Xenotropic Murine Retro Virus (XMRV). Further studies however proved to be inconclusive. Dr Myhill believes M.E. to be the effect of Mitochondrial Failure, I will come back to this later. Many also believe that it may be related to the Epstein Barr Virus.

Many people with M.E. report the onset to have followed an episode of Glandular Fever. Glandular Fever is caused by Epstein Barr. Some people cannot recall a specific viral episode prior to the onset of their illness. Epstein Barr often affects people without them realising it; it can be as mild as having a little phlegm in the throat for a few days, but then it remains within the system indefinitely.

M.E. nearly always seems to follow a trigger event. As already suggested, for most, this trigger event is a viral episode. For others it usually follows a very stressful event, it could be a mental breakdown, mourning, an allergic reaction, etc.. Anything that affects the body suddenly, for a notable amount of time. Such a stress may be psychological, but it will also affect the body physically.

There is much confusion between M.E. and Chronic Fatigue Syndrome (CFS). I do not believe there is an actual line in the sand in regards to the difference, but the following is my understanding. 'Chronic Fatigue' is an umbrella term, used to encompass many different fatigue problems. If someone is reporting abnormal levels of fatigue (chronic fatigue) they need to be tested for various different fatigue related illnesses and conditions. 'Chronic Fatigue Syndrome' is where a persons condition becomes more symptomatic than simply having problems with fatigue. They start to develop more physical symptoms, such as headaches, chronic itching, pain in their limbs, cognitive struggling, etc.. M.E. is the most severe form of CFS, rendering sufferers unable to work, usually housebound and sometimes bed bound.

The problem with the definition of this condition being so fluffy is that it makes it very hard to receive a diagnosis. It makes it difficult for any doctor to take us seriously, and know how to treat us. And it causes problems for researchers, as they do not know if they are researching one condition or many. How can they have a sample group if the sample group may be containing sufferers who actually have different conditions?

Until recently a diagnosis would not be made until someone had been ill for six months or longer. The reason for this was that the symptoms for Post Viral Syndrome (PVS) and the symptoms for M.E. are virtually identical. Recent thinking is that if PVS goes untreated a patient may develop M.E.. It is in the interest of everyone, the patients, doctors, NHS, and government, to treat sufferers early so that less damage is done.

The International Consensus Criteria for M.E. explains very specifically how to diagnose M.E.. Because M.E. is a syndrome sufferers will not all experience exactly the same symptoms. The Consensus Criteria explains which symptoms are likely to go together, how long patients will have had them for, etc. Doctors should now be using this to diagnose M.E., but many do not.

A. Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e) Compulsory This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are:

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.

2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms

3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.

4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Operational Notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden), or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for 1⁄2 hour, it will take much longer to recover from grocery shopping for 1⁄2 hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

B. Neurological Impairments At least One Symptom from three of the following four symptom categories

1. Neurocognitive Impairments

a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia

b. Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

2. Pain

a. Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

3. Sleep Disturbance

a. Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares

b. Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

4. Neurosensory, Perceptual and Motor Disturbances

a. Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception

b. Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue.

Overload phenomena may be evident when two tasks are performed simultaneously. Abnormal reaction to light – fluctuation or reduced accommodation responses of the pupils with retention of reaction. Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage. Motor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

C. Immune, Gastro-intestinal & Genitourinary Impairments

At least One Symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.

e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation

2. Susceptibility to viral infections with prolonged recovery periods

3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome

4. Genitourinary:e.g.urinaryurgencyorfrequency,nocturia

5. Sensitivities to food, medications, odours or chemicals

Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immuneactivation.

D. Energy Production/Transportation Impairments: At least One Symptom

1. Cardiovascular: e.g. inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

2. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles

3. Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities

4. Intolerance of extremes of temperature

Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.

A lot of doctors argue that the M.E. symptoms are the physical expression of depression. They believe their patients to be depressed, even if the patients are not struggling with lowered mood. The defining difference between physical depressive symptoms and M.E. is post exertional malaise. Exercise is often used as a treatment for depression. It genuinely does help with depression, lifting peoples mood if they persist. When someone with M.E. exercises however, their symptoms are exacerbated. This of course does not simply apply to a physical work out, but to every day activities, including cognitive pursuits.

Dr Myhill believes this symptom to be caused by Mitochondrial Failure. (2) "Mitochondria are the cell's power producers. They convert energy into forms that are usable by the cell. They are the sites of cellular respiration which ultimately generates fuel for the cell's activities." The muscle cells of the body contain mitochondria. If the mitochondria fail, every muscle cell is fatigued. This easily explains such symptoms as muscle pain, cardio myopathy, and headaches. From here, many of the other symptoms can be explained, for example Orthostatic Intolerance is caused by problems with blood pressure; possibly an affect of the heart muscle being fatigued.

Recovery from M.E. is rare in adults. Adolescents who develop M.E. usually make at least a partial recovery. Usually those who have recovered still struggle with post exertional malaise a little for the rest of their lives.

M.E. is a cruel condition. It's an invisible illness, so sufferers are judged very harshly by the public. Every person who has M.E. tells a story of losing their life. It seems particularly to strike those who were very active, leading busy social lives; burning the candle at both ends. M.E. is detrimental. Sufferers are not only forced to give up their social lives, but usually their careers too. The ability to have a normal family life is stretched to the limit. Most women with M.E. struggle with pregnancy. People who had previously been highly intelligent find themselves struggling to make sentences, or read paragraphs. Sufferers frequently find themselves asking themselves who they are and where their life went.



1 comment:

  1. And they struggle to work out how to finish a blog post ;)