Naked Science Forum
Life Sciences => Physiology & Medicine => Topic started by: thedoc on 07/06/2012 16:01:09
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Dr. Esther Crawley explains what chronic fatigue syndrome is, who gets it, the genetic component of chronic fatigue syndrome, and what we can currently do to help young people with the disease.
Read a transcript of the interview by clicking here (http://www.thenakedscientists.com/HTML/content/interviews/interview/2097/)
or [chapter podcast=3979 track=12.05.13/Naked_Scientists_Show_12.05.13_10153.mp3](https://www.thenakedscientists.com/forum/proxy.php?request=http%3A%2F%2Fwww.thenakedscientists.com%2FHTML%2Ftypo3conf%2Fext%2Fnaksci_podcast%2Fgnome-settings-sound.gif&hash=f2b0d108dc173aeaa367f8db2e2171bd) Listen to it now[/chapter] or [download as MP3] (http://nakeddiscovery.com/downloads/split_individual/12.05.13/Naked_Scientists_Show_12.05.13_10153.mp3)
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ncbi.nlm.nih.gov defined Chronic fatigue syndrome as severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions.
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CFS, also known as M.E., is a whole lot more than 'tiredness'. If a person with M.E. goes past their very limited capabilities, they make themselves very much more ill. There's a new definition out, published last year. It was written by a group that in total have 400 years experience in the field, and the references include links to all the important bio-medical research on the disease.
Esther Crawley does not really deal with people with CFS aka ME, as the definition of the disease that she uses (Fukuda, Oxford) are not accurate. See my previous post (http://www.thenakedscientists.com/forum/index.php?topic=44176.0), and below:
Myalgic encephalomyelitis: International Consensus Criteria (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full)
"Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1–3] and immune system [4–8], dysfunction of cellular energy metabolism and ion transport [9–11] and cardiovascular abnormalities [12–14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.
The problem with broadly inclusive criteria [15, 16] is that they do not select homogeneous sets of patients. The Centers for Disease Control prevalence estimates increased tenfold from 0.24% using the Fukuda criteria [17] to 2.54% using the Reeves empirical criteria [16]. Jason et al. [18] suggest that there are flaws in Reeves’ methodology because it is possible to meet the empirical criteria for ME without having any physical symptoms and it does not discriminate patients with ME/CFS from those with major depressive disorder. Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds [19].
Some symptoms of the Fukuda criteria overlap with depression, whereas the Canadian Consensus Criteria [20] differentiate patients with ME from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments [21]."
"A. Postexertional 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 as follows:
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. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h 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.
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 noninflammatory 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 phenomenamay be evident when two tasks are performed simultaneously. Abnormal accommodation responsesof the pupils are common.Sleep disturbancesare typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage.Motor disturbancesmay 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 and 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 immune activation.
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 postexertional 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 programme.
3. Pain may seem erratic and migrate quickly. Joint hypermobility is common.
Notes:Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults."
Go to the link to read the references.
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Hi I must stress that people with CFS/ME if pushed beyond their capabilities (which is far lower than a normal healthy person) can / will develop issues with vital organs. This raises issues with the inability to control heart rate (POTS), body temperature, sugar levels (Hypoglycaemia), digestion and other devastating conditions that causes irreversible damage; these are daily issues for us. Each one of these issues is bad in itself, let a lone having all of them and more…
We are alienated by friends, family, work, Dr’s, Politian’s – trapped in a body that is unwell all the time and totally persecuted by our own Benefits system; which is a travesty. The people I know with CFS/ME are / were all very hard working people that paid their Taxes and National Insurance for years; and have been dropped from society and labelled lazy, depressed and Hypochondriacs.
We are not ill because we want to be, that is for sure, but we need serious research as it is an illness / condition far beyond being tired and sleeping too much, or in our heads, but a life threatening condition that 250.000 people have in the UK alone.
I think this interview hardly even touched the surface of this condition and feel making it a class issues is utterly inaccurate and lazy.
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Esther Crawely is researching fatigue. Who knows why, everyone gets it. ME on the other hand is a neuro immune disease, which Crawley should know by now. She should also know that depression, tired teens and herpes viruses cause fatigue, but not ME. So why study them all together? Using a mixed cohort is illogical for making discoveries of any kind.
Her remark that people are genetically predisposed to fatigue is equally laughable when you don't forget that depression, tired teens and herpes viruses have fatigue and that everyone gets it at some point. It is a symptom, not defined. It is also not ME the neuro immune disease. Rates of secondary depression in ME are also no different than in other neuro immune diseases.
Retroviruses also become your DNA. Acquired not born with it.
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Thank you for nice topic shearing. Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. ... This condition is also known as systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME). Sometimes it's abbreviated as ME/CFS.