Shoot the medical messenger

I'm actually tickled by this one! I've taken it from a link on one of the forums, who have taken it from the ME Association website ... who have taken it from the Sunday Times. You would think that the Sunday Times would have someone with a medical background proof read their medical articles. Apparently not.

This article has been written in response to the piece on Radio4's Today program. Once again they have completely ignored the part by Dr Shepherd, instead focusing on Simon Wessely's interview. And of Wessely's piece, they have focused on one tiny part, the part that annoyed me the most as it happened; the assertion that people with M.E. would rather have an incurable biomedical illness than a treatable psychological illness. For some reason they assume that the reason many people with M.E. are upset at all the research money for M.E. being put into psychological research, is because we do not wish to be labelled as being mentally ill. It seems to have failed to register with them that most people with M.E. are already on anti depressants, suffering from depression, or anxiety. Most of my M.E. suffering friends suffer from at least one psychological difficulty. None of us have any shame in admitting to it though. We simply do not feel that M.E. is also a psychological illness.

But I digress. You will notice that the writer of this article does not actually know the difference between a psychological condition and a neurological condition. I am guessing they think 'it's in the head' pretty much sums it up.

Taken from thefreedictionary.com:

Noun    1.    psychological condition - (psychology) a mental condition in which the qualities of a state are relatively constant even though the state itself may be dynamic; "a manic state"

Noun    1.    neurological disorder - a disorder of the nervous system.

And just to be clear:

nervous system n. The system of cells, tissues, and organs that regulates the body's responses to internal and external stimuli. In vertebrates it consists of the brain, spinal cord, nerves, ganglia, and parts of the receptor and effector organs.

In other words ... it has a biomedical root.

So, after having ceased laughing at the obvious faux pas of this creative writer, I was then perplexed as to how he could ascertain that "some sufferers cling with grim and livid determination to a non-existent biomedical explanation". Read that again; he knows that M.E. has no existing medical explanation? Can he share with us how he knows this? The evidence? The research? Pretty please.

His whole article is written in such a tone as to make fun of people who suffer with M.E.. This is serious and I shouldn't be laughing. I really do hope that most people reading it will see that he obviously does not know what he is talking about; he made a huge mistake in showing his ignorance regarding mental and neurological conditions, and The Sunday Times slipped up badly in not having an expert proof read the article. I am saddened that anyone can think it fair to make fun of a serious condition; I only hope that when The Sunday Times receive a plethora complaints regarding his idiocy that they revoke his payment for doing so.

‘Shoot the medical messenger – see if that’ll cure you’, Rod Liddle in The Sunday Times, 31 July 2011
by tonybritton on July 31, 2011

From The Sunday Times, 31 July 2011 (comment piece by Rod Little)

Shoot the medical messenger – see if that’ll cure you

Medical experts who put forward controversial ideas should investigate their theories and not give in to ‘extremist’ sufferers

They are hopping up and down with fury at the ME Association, the organisation that helps people suffering from what used to be known as “chronic fatigue syndrome” but now, for politically correct reasons, is known as myalgic encephalomyelitis.

Actually, I say they’re hopping up and down, but given the nature of their affliction, they’re probably sitting quite still, really. I meant hopping up and down as a figure of speech. Either way, they’re very angry. The problem was an interview on the BBC Today programme with a leading researcher into the causes of chronic fatigue syndrome, Prof Simon Wessely.

He believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis.

As a consequence, he has received menacing phone calls and even death threats from “extremist” ME sufferers. So too has another researcher, Prof Myra McClure, who says she will now have nothing more to do with the whole business because she’s fed up with being abused.

It seems that those who suffer from ME, which used to be known as yuppie flu, do not wish to be stigmatised as malingering mentals, which is what they fear will happen if the illness turns out to have a psychiatric rather than biomedical basis.

On the ME Association website they don’t actually threaten to kill Wessely; instead you are left with the impression that he is pursuing this line of inquiry for mysteriously infernal purposes, and that he knows nothing about anything, and that he is part of a conspiracy with the whole psychiatric profession and the Today programme, especially Sarah Montague, and the government to cover up the real truth about chronic fatigue syndrome.

Indeed, such is the foaming paranoia on this site that you begin to suspect that if ME does have a neurological basis, it’s probably going to be the least of their mental worries.

The truth about ME, they assert, is that it is the consequence of some sort of weird retrovirus. In other words, it’s a proper illness, which we’ve caught from someone or something; it’s been given to us, it didn’t originate with us.

It is a peculiar and distressing, if not untypical, reaction from people faced with a mysterious and incurable disease. As Wessely himself says, in blank incomprehension, they would rather the disease be the consequence of a retrovirus that could possibly be fatal than be the result of a neurological disorder for which there is at least a form of palliative treatment.

No matter what evidence is marshalled by the likes of Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation; they assume, one supposes, that if it is primarily a mental condition then they have sort of brought it on themselves, and are in some way to blame for their affliction (which is a nonsense, of course).

Their denials and paranoia remind me a little of the reaction of some parents with autistic children who resist with fury the suggestion that this distressing condition might have been brought about partly as a consequence of assortative mating, as suggested by Prof Simon Baron-Cohen, rather than through mercury floating around in the atmosphere or the water pipes, or indeed the MMR vaccine.

The now wholly discredited MMR theory certainly served the psychological requirements of some unhappy parents, being not merely a clear cause but one that was imposed on their offspring by government diktat.

Baron-Cohen, meanwhile, received a lot of flak for this theory but, as he puts it, just because it is controversial doesn’t mean it should not be investigated.

Either way, some people seem to be terribly protective of their ailments, over which they believe they have a sort of droit de seigneur. Research of which, in their ignorance, they disapprove is seen as part of some plot to do them down and consequently underplay their suffering, and they decide its proponents must be vilified.

New Definition for M.E.

I've nicked this from a friend of mine on Facebook (thank you Rupert). I'm not lucid enough to actually be able to read and process it myself at the moment, but am hoping it'll be useful to others. It's the new definition for M.E. as taken from the ME Associations website.

"MYALGIC ENCEPHALOMYELITIS: INTERNATIONAL CONSENSUS CRITERIA Adult and Pediatric ● Clinical and Research

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).

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.urinary urgency or frequency, 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.

Paediatric Considerations

Symptoms may progress more slowly in children than in teenagers or adults. In addition to post- exertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances. 1. Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness. 2. Neurocognitive Impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school program. 3. Pain may seem erratic and migrate quickly. Joint hyper-mobility is common.

Notes: Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults.

Classification ____ Myalgic Encephalomyelitis ____ Atypical Myalgic Encephalomyelitis: meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded.

Paediatric: ‘primary’ school phobia.

Co-morbid Entities: Fibromyalgia, Myofascial Pain Syndrome, Temporomandibular Joint Syndrome, Irritable Bowel Syndrome, Interstitial Cystitis, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Migraines, Allergies, Multiple Chemical Sensitivities, Hashimoto’s Thyroiditis, Sicca Syndrome, Reactive Depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.

http://www.meassociation.org.uk/?p=7173"