Post Activity Relapse (PAR) or PEM?

Another contribution to the discussion of the key characteristic of ME, Post Exertional Malaise (PEM), comes from Kasper Ezelius of the Sweish patient group ME-föreningen: Suggestion to replace PEM by PAR

Deterioration after mental or physical exertion is often referred as “post exertional malaise” (PEM). But the word malaise, is very far from what it is. In the Swedish medical dictionary malaise is defined as a vague diffuse sense of discomfort and tiredness. But the patients rather experience a crash with an increase of most of the symptoms.

To be clear that the entire symptom complex deteriorates, it would be better to replace the word “malaise” with “relapse”. Relapse also better describes that it takes some days to recover. Post exertional malaise could be interpreted like a few minutes of feeling slightly unwell after running.

The exertion does not need to feel like an exertion at the time the patient is doing it, and it would be better to replace the word “exertion” with “activity”. So an improved term of “post exertional malaise” (PEM) would be “post activity relapse” (PAR). I think post activity relapse is a far better description, and I hope future disease descriptions, clinical guides and research articles use this terminology. I think post activity relapse is short enough in order to use it several times in a text, without being felt as too burdensome, but I think it is important to clarify somewhere in the text that the activity can be both of mental and physical kind.

The term “relapse after mental or physical activity” has the advantage of being clear that:

  • both physical and mental activity create worsening
  • it must not be an exertion in the classical sense, but rather an activity
  • the worsening does not only create malaise, but a whole range of the ME symptoms are worsened (hyperacusis, orthostatic intolerance, need to rest, cognitive difficulties, pain, etc).
  • it takes days to recover

The relapse does not need to occur directly after the exertion, but it may take a few days (1-3 days, sometimes more) before the deterioration starts. This has been described by Dr John L Whiting from Australia in the message list Co-Cure the 9th of December 2015. For the case there is a delay in the relapse, I suggest that the term “delayed post activity relapse” (DPAR) is used, but that it is also clarified that the activity can be both mental and physical.

Example of use:
A patient with ME must have post activity relapse (PAR), which is a relapse after mental or physical activity. A patient may at occations experience a delayed onset of the PAR, and this is called delayed post activity relapse (DPAR).

Summary
Post exertional malaise is proposed to be replaced by “relapse after mental or physical activity”, but for repeated use a shorter form can be used: “post activity relapse” which can be abbreviated “PAR”.

At the occations the onset is delayed the term “relapse with delayed onset after mental or physical activity” is used, but for repeated use a shorter term can be used: “delayed post activity relapse” which can be abbreviated “DPAR”.

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Canadian evidence-based ME/CFS diagnosis and management

Article abstract:

This review was written from the viewpoint of the treating clinician to educate health care professionals and the public about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It includes: the clinical definition of ME/CFS with emphasis on how to diagnose ME/CFS; the etiology, pathophysiology, management approach, long-term prognosis and economic cost of ME/CFS.

After reading this review, you will be better able to diagnose and treat your patients with ME/CFS using the tools and information provided. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic medical condition characterized by symptom clusters that include: pathological fatigue and malaise that is worse after exertion, cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain, autonomic dysfunction, neuroendocrine and immune symptoms.

ME/CFS is common, often severely disabling and costly. The Institute of Medicine (IOM) reviewed the ME/CFS literature and estimates that between 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US.

The IOM suggested a new name for ME/CFS and called it Systemic Exertion Intolerance Disease (SEID). SEID’s diagnostic criteria are less specific and do not exclude psychiatric disorders in the criteria. The 2010 Canadian Community Health Survey discovered that 29% of patients with ME/CFS had unmet health care needs and 20% had food insecurity – lack of access to sufficient healthy foods.

ME/CFS can be severely disabling and cause patients to be bedridden. Yet most patients (80%) struggle to get a diagnosis because doctors have not been taught how to diagnose or treat ME/CFS in medical schools or in their post-graduate educational training. Consequently, the patients with ME/CFS suffer.

They are not diagnosed with ME/CFS and are not treated accordingly. Instead of compassionate care from their doctors, they are often ridiculed by the very people from whom they seek help.

The precise etiology of ME/CFS remains unknown, but recent advances and research discoveries are beginning to shed light on the enigma of this disease including the following contributors: infectious, genetic, immune, cognitive including sleep, metabolic and biochemical abnormalities.

Management of patients with ME/CFS is supportive symptomatic treatment with a patient centered care approach that begins with the symptoms that are most troublesome for the patient. Pacing of activities with strategic rest periods is, in our opinion, the most important coping strategy patients can learn to better manage their illness and stop their post-exertional fatigue and malaise. Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.

Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians, by AC Bested, LM Marshall in Reviews on Environmental Health, 2015 Dec 1;30(4):223-49

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WAMES writes in support of releasing PACE trial data

Today WAMES, joins the ME Association, Tymes Trust, 25% Group, Invest in ME and Hope for ME in calling for the release of PACE trial data so that an independent investigation can begin:

To: Records and Information Compliance Manager, Queen Mary University London
Copy to: Professor Simon Gaskell, Principal, Queen Mary University London

RELEASE OF PACE TRIAL DATA

Dear Sir,

WAMES, the national charity representing people with ME & CFS in Wales, feels compelled to write and express immense concern at the continuing refusal of QMUL to share data from the PACE trial with other researchers. This refusal makes life difficult for patients and healthcare professionals alike.

In Wales WAMES is working with Welsh Government officials and Health Boards to improve healthcare pathways and services for people with ME and CFS. Health Boards wish to develop services with a sound evidence base. Patients wish to be sure that services offered are safe and appropriate for them, but currently there are so many questions and doubts surrounding the so-called evidence base and especially the PACE trial:

  • Researchers around the world are challenging the methodology and interpretation of the results
  • Patient surveys and personal stories highlight the harm or lack of help from exercise programmes
  • Results of research reveal ongoing dysfunction following exercise, which is at odds with the assumptions underlying the PACE trial.

Perhaps some people can be helped by the recommended therapies, but patients need to know if they will be helped or harmed and if they can trust the professionals who promote the therapies at the expense of other approaches. Health Boards need to know if there are better ways to spend their money in these cash strapped times.

Sharing data from the trial and cooperating with an independent investigation will hopefully provide enough clarification of the value of the therapies to:

  • safeguard the health and safety of the estimated 250,000 people with ME and CFS in the UK
  • promote trust between patients and NHS staff
  • enable Health Boards to spend money effectively

With so much to gain from data sharing, we urge you not to delay and face up to the inevitable.

Yours sincerely,   Jan Russell

Jan Russell          jan@wames.org.uk
Chair / Cadeirydd
Welsh Association of ME & CFS Support
Cymdeithas Cefnogi ME a CFS Cymru

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Replacing ME and CFS with SEID is not the way forward

Abstract of discussion paper:

Myalgic encephalomyelitis (ME), described in the medical literature since 1938, is characterized by distinctive muscular symptoms, neurological symptoms, and signs of circulatory impairment. The only mandatory feature of chronic fatigue syndrome (CFS), introduced in 1988 and redefined in 1994, is chronic fatigue, which should be accompanied by at least four or more out of eight “additional” symptoms.

The use of the abstract, polythetic criteria of CFS, which define a heterogeneous patient population, and self-report has hampered both scientific progress and accurate diagnosis. To resolve the “diagnostic impasse” the Institute of Medicine proposes that a new clinical entity, systemic exercise intolerance disease (SEID), should replace the clinical entities ME and CFS.

However, adopting SEID and its defining symptoms, does not resolve methodological and diagnostic issues. Firstly, a new diagnostic entity cannot replace two distinct, partially overlapping, clinical entities such as ME and CFS.

Secondly, due to the nature of the diagnostic criteria, the employment of self-report, and the lack of criteria to exclude patients with other conditions, the SEID criteria seem to select an even more heterogeneous patient population, causing additional diagnostic confusion. This article discusses methodological and diagnostic issues related to SEID and proposes a methodological solution for the current “diagnostic impasse”.

Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward, by Frank N.M. Twisk, in Diagnostics 2016, 6(1), 10 [ME-de-patiënten Foundation, Zonnedauw 15, 1906 HB Limmen, The Netherlands]

Download pdf of full text

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The downside of mindfulness

Guardian article: Is mindfulness making us ill? by Dawn Foster, Saturday 23 January 2016

It’s the relaxation technique of choice, popular with employers and even the NHS. But some have found it can have unexpected effects

I am sitting in a circle in a grey, corporate room with 10 housing association employees – administrators, security guards, cleaners – eyes darting about nervously. We are asked to eat a sandwich in silence. To think about every taste and texture, every chewing motion and bite. Far from being relaxed, I feel excruciatingly uncomfortable and begin to wonder if my jaw is malfunctioning. I’m here to write about a new mindfulness initiative, and since I’ve never to my knowledge had any mental health issues and usually thrive under stress, I anticipate a straightforward, if awkward, experience.

Then comes the meditation. We’re told to close our eyes and think about our bodies in relation to the chair, the floor, the room: how each limb touches the arms, the back, the legs of the seat, while breathing slowly. But there’s one small catch: I can’t breathe. No matter how fast, slow, deep or shallow my breaths are, it feels as though my lungs are sealed. My instincts tell me to run, but I can’t move my arms or legs. I feel a rising panic and worry that I might pass out, my mind racing. Then we’re told to open our eyes and the feeling dissipates. I look around. No one else appears to have felt they were facing imminent death. What just happened?

For days afterwards, I feel on edge. I have a permanent tension headache and I jump at the slightest unexpected noise. The fact that something seemingly benign, positive and hugely popular had such a profound effect has taken me by surprise.

Mindfulness, the practice of sitting still and focusing on your breath and thoughts, has surged in popularity over the last few years, with a boom in apps, online courses, books and articles extolling its virtues. It can be done alone or with a guide (digital or human), and with so much hand-wringing about our frenetic, time-poor lifestyles and information overload, it seems to offer a wholesome solution: a quiet port in the storm and an opportunity for self-examination. The Headspace app, which offers 10-minute guided meditations on your smartphone, has more than three million users worldwide and is worth over £25m. Meanwhile, publishers have rushed to put out workbooks and guides to line the wellness shelves in bookshops.

Large organisations such as Google, Apple, Sony, Ikea, the Department of Health and Transport for London have adopted mindfulness or meditation as part of their employee packages, claiming it leads to a happier workforce, increased productivity and fewer sick days. But could such a one-size-fits-all solution backfire in unexpected ways?

Even a year later, recalling the sensations and feelings I experienced in that room summons a resurgent wave of panic and tightness in my chest. Out of curiosity, I try the Headspace app, but the breathing exercises leave me with pins and needles in my face and a burgeoning terror. “Let your thoughts move wherever they please,” the app urges. I just want it to stop. And, as I discovered, I’m not the only person who doesn’t find mindfulness comforting.

Claire, a 37-year-old in a highly competitive industry, was sent on a three-day mindfulness course with colleagues as part of a training programme. “Initially, I found it relaxing,” she says, “but then I found I felt completely zoned out while doing it. Within two or three hours of later sessions, I was starting to really, really panic.” The sessions resurfaced memories of her traumatic childhood, and she experienced a series of panic attacks. “Somehow, the course triggered things I had previously got over,” Claire says. “I had a breakdown and spent three months in a psychiatric unit. It was a depressive breakdown with psychotic elements related to the trauma, and several dissociative episodes.”

Four and a half years later, Claire is still working part-time and is in and out of hospital. She became addicted to alcohol, when previously she was driven and high-performing, and believes mindfulness was the catalyst for her breakdown. Her doctors have advised her to avoid relaxation methods, and she spent months in one-to-one therapy. “Recovery involves being completely grounded,” she says, “so yoga is out.”

Research suggests her experience might not be unique. Internet forums abound with people seeking advice after experiencing panic attacks, hearing voices or finding that meditation has deepened their depression after some initial respite. In their recent book, The Buddha Pill, psychologists Miguel Farias and Catherine Wikholm voice concern about the lack of research into the adverse effects of meditation and the “dark side” of mindfulness. “Since the book’s been published, we’ve had a number of emails from people wanting to tell us about adverse effects they have experienced,” Wikholm says. “Often, people have thought they were alone with this, or they blamed themselves, thinking they somehow did it wrong, when actually it doesn’t seem it’s all that uncommon.”

One story in particular prompted Farias to look further into adverse effects. Louise, a woman in her 50s who had been practising yoga for 20 years, went away to a meditation retreat. While meditating, she felt dissociated from herself and became worried. Dismissing it as a routine side-effect of meditation, Louise continued with the exercises. The following day, after returning home, her body felt completely numb and she didn’t want to get out of bed. Her husband took her to the doctor, who referred her to a psychiatrist. For the next 15 years she was treated for psychotic depression.

Farias looked at the research into unexpected side-effects. A 1992 study by David Shapiro, a professor at the University of California, Irvine, found that 63% of the group studied, who had varying degrees of experience in meditation and had each tried mindfulness, had suffered at least one negative effect from meditation retreats, while 7% reported profoundly adverse effects including panic, depression, pain and anxiety. Shapiro’s study was small-scale; several research papers, including a 2011 study by Duke University in North Carolina, have raised concerns at the lack of quality research on the impact of mindfulness, specifically the lack of controlled studies.

Farias feels that media coverage inflates the moderate positive effects of mindfulness, and either doesn’t report or underplays the downsides. “Mindfulness can have negative effects for some people, even if you’re doing it for only 20 minutes a day,” Farias says. “It’s difficult to tell how common [negative] experiences are, because mindfulness researchers have failed to measure them, and may even have discouraged participants from reporting them by attributing the blame to them.”

Kate Williams, a PhD researcher in psychiatry at the University of Manchester and a mindfulness teacher, says negative experiences generally fall into one of two categories. The first is seen as a natural emotional reaction to self-exploration. “What we learn through meditation is to explore our experiences with an open and nonjudgmental attitude, whether the experience that arises is pleasant, unpleasant or neutral,” she says.

The second, Williams says, is more severe and disconcerting: “Experiences can be quite extreme, to the extent of inducing paranoia, delusions, confusion, mania or depression.” After years of training, research and practice, her own personal meditation has included some of these negative experiences. “Longer periods of meditation have at times led me to feel a loss of identity and left me feeling extremely vulnerable, almost like an open wound,” Williams says. As an experienced mindfulness teacher, however, she says she is able to deal with these negative experiences without lasting effect.

Rachel, a 34-year-old film-maker from London, experimented with mindfulness several years ago. An old school friend who had tried it attempted to warn her off. “He said, ‘It’s hardcore – you’ll go through things you don’t want to go through and it might not always be positive.’ I suppose sitting with yourself is hard, especially when you’re in a place where you don’t really like yourself. Meditation can’t ‘fix’ anyone. That’s not what it’s for.”

After a few months of following guided meditations, and feeling increasingly anxious, Rachel had what she describes as a “meltdown” immediately after practising some of the techniques she’d learned; the relationship she was in broke down. “That’s the horrible hangover I have from this: instead of having a sense of calm, I overanalyse and scrutinise everything. Things would run round in my mind, and suddenly I’d be doing things that were totally out of character, acting very, very erratically. Having panic attacks that would restrict my breathing and, once, sent me into a blackout seizure on the studio floor that involved an ambulance trip to accident and emergency.” Rachel has recovered to some extent; she experiences similar feelings on a lower level even today, but has learned to recognise the symptoms and take steps to combat them.

So are employers and experts right to extol the virtues of mindfulness? According to Will Davies, senior lecturer at Goldsmiths and author of The Happiness Industry, our mental health has become a money-making opportunity. “The measurement of our mental and emotional states at work is advancing rapidly at the moment,” he says, “and businesses are increasingly aware of the financial costs that stress, depression and anxiety saddle them with.”

Rather than removing the source of stress, whether that’s unfeasible workloads, poor management or low morale, some employers encourage their staff to meditate: a quick fix that’s much cheaper, at least in the short term. After all, it’s harder to complain that you’re under too much stress at work if your employer points out that they’ve offered you relaxation classes: the blame then falls on the individual. “Mindfulness has been grabbed in recent years as a way to help people cope with their own powerlessness in the workplace,” Davies says. “We’re now reaching the stage where mandatory meditation is being discussed as a route to heightened productivity, in tandem with various apps, wearable devices and forms of low-level employee surveillance.”

One former Labour backbencher, Chris Ruane, recently proposed meditation for civil servants, on the basis that it would cut Whitehall costs by lowering sick leave through stress, rather than making the workplace and jobs less stressful in the first place. “The whole agenda is so fraught with contradictions, between its economic goals and its supposedly spiritual methods,” Davies argues. “It’s a wonder anyone takes it seriously at all.”

Mindfulness has also been adopted by the NHS, with many primary care trusts offering and recommending the practice in lieu of cognitive behavioural therapy (CBT). “It fits nicely with the Nutribullet-chugging, clean-eating crowd, because it doesn’t involve any tablets,” says Bethan, a mental health nurse working in east London. “My main problem with it is that it’s just another word for awareness.”

Over the past few years, Bethan has noticed mindfulness mentioned or recommended increasingly at work, and says many colleagues have been offered sessions and training as part of their professional development. But the move towards mindfulness delivered through online or self-help programmes isn’t for everyone. “It’s fine, but realising you have depression isn’t the same as tackling it,” she says. “I don’t see it as any different from the five-a-day campaign: we know what we should be eating, but so many of us don’t do it. We know that isolating ourselves isn’t helpful when we feel blue, but we still do that.”

Part of the drive is simple cost-cutting. With NHS budgets squeezed, resource-intensive and diverse therapies that involve one-on-one consultations are far more expensive to dispense than online or group therapies such as mindfulness. A CBT course costs the NHS £950 per participant on average, while mindfulness-based cognitive therapy, because it’s delivered in a group, comes in at around £300 a person. “It’s cheap, and it does make people think twice about their choices, so in some respects it’s helpful,” Bethan says.

But in more serious cases, could it be doing more harm than good? Florian Ruths has researched this area for 10 years, as clinical lead for mindfulness-based therapy in the South London and Maudsley NHS foundation trust. He believes it is possible to teach yourself mindfulness through apps, books or online guides. “For most people, I think if you’re not suffering from any clinical issues, or illness, or from stress to a degree that you’re somewhat disabled, it’s fine,” he says. “We talk about illness as disability, and disability may arise through sadness, it may arise through emotional disturbance, like anxiety. Then, obviously, it becomes a different ballgame, and it would be good to have a guided practice to take you through it.” This runs counter to the drive towards online mindfulness apps, delivered without supervision, and with little to no adaptation to individual needs or problems.

But for Ruths, the benefits outweigh the risk of unusual effects. “If we exercise, we live longer, we’re slimmer, we’ve got less risk of dementia, we’re happier and less anxious,” he says. “People don’t talk about the fact that when you exercise, you are at a natural risk of injuring yourself. When people say in the new year, ‘I’m going to go to the gym’ – out of 100 people who do that, about 20 will injure themselves, because they haven’t been taught how to do it properly, or they’ve not listened to their bodies. So when you’re a responsible clinician or GP, you tell someone to get a good trainer.”

People may not know they have a bipolar vulnerability until they try mindfulness
Certain mental health problems increase the risk of adverse effects from mindfulness. “If you have post-traumatic stress disorder, there is a certain chance that you may find meditation too difficult to do, as you may be re-experiencing traumatic memories,” Ruths says. “Once again, it’s about having experienced trainers to facilitate that. We’ve seen some evidence that people who’ve got bipolar vulnerability may struggle, but we need to keep in mind that it may be accidental, or it may be something we don’t know about yet.”

Of course, people may not know they have a bipolar vulnerability until they try mindfulness. Or they might have repressed the symptoms of post-traumatic stress disorder, only for these to emerge after trying the practice.

How can an individual gauge whether they’re likely to have negative side-effects? Both Farias and Ruths agree there isn’t a substantial body of evidence yet on how mindfulness works, or what causes negative reactions. One of the reasons is obvious: people who react badly tend to drop out of classes, or stop using the app or workbook; rather than make a fuss, they quietly walk away. Part of this is down to the current faddishness of mindfulness and the way it’s marketed: unlike prescribed psychotherapy or CBT, it’s viewed as an alternative lifestyle choice, rather than a powerful form of therapy.

Claire is clear about how she feels mindfulness should be discussed and delivered: “A lot of the people who are trained in mindfulness are not trained in the dangers as well as the potential benefits,” she says. “My experience of people who teach it is that they don’t know how to help people if it goes too far.”

There is currently no professionally accredited training for mindfulness teachers, and nothing to stop anyone calling themselves a mindfulness coach, though advocates are calling for that to change. Finding an experienced teacher who comes recommended, and not being afraid to discuss negative side-effects with your teacher or GP, means you’re far more likely to enjoy and benefit from the experience.

As both Claire and I have found, there are alternative relaxation methods that can keep you grounded: reading, carving out more time to spend with friends, and simply knowing when to take a break from the frenetic pace of life. Meanwhile, Claire’s experience has encouraged her to push for a better understanding of alternative therapies. “No one would suggest CBT was done by someone who wasn’t trained,” she says. “I’d like to see a wider discussion about what mindfulness is – and on what the side-effects can be.”

Some names have been changed.

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Comparing the DePaul Symptom Questionnaire with doctors’assessments

Research abstract:

Background: Diagnostic assessment of chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) is largely based on a two part process; screening patients who might meet criteria and following up this assessment with physicians’ clinical evaluation of a range of inclusionary symptoms and exclusionary illnesses.

Purpose: The aim was to assess how well the DePaul Symptom Questionnaire (DSQ) screened for patients who were ultimately diagnosed by physicians using the Canadian Consensus Criteria (CCC).

Methods: Sixty-four patients referred for evaluation of possible CFS or ME were screened initially using the DSQ, and then evaluated and subsequently diagnosed by physicians. To assess the consistency between the self-report DSQ and the physicians’ diagnosis, sensitivity and specificity as well as predictive values were calculated.

Results: The DSQ identified 60 and the physicians identified 56 as having a CCC diagnosis. The overall agreement between the two ratings on the diagnostic assessment part was moderate (Kappa = 0.45, p < .001). The sensitivity of DSQ was good
(92%) while the specificity was moderate (75%). Positive and negative predictive values were 98% and 38%, respectively.

Conclusion: DSQ is useful for detecting and screening symptoms consistent with a CCC diagnosis in clinical practice and research. However, it is important for initial screening of self-report symptoms to be followed up by subsequent medical and psychiatric examination in order to identify possible exclusionary medical and psychiatric disorders.

Comparing the DePaul Symptom Questionnaire with physician assessments:
a preliminary study, by Elin B. Strand, Kristine Lillestøl, Leonard A. Jason, Kari Tveito, Lien My Diep, Simen Strand Valla, Madison Sunnquist, Ingrid B. Helland, Ingrid Herder & Toril Dammen in Fatigue: Biomedicine, Health & Behavior [Published online: 19 Jan 2016]

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Developing case definitions for ME and CFS using practical experience and consensus

Research abstract:

Background:
There has been considerable controversy regarding how to name and define the illnesses known as myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). The Institute of Medicine (IOM) report has proposed new clinical criteria and a new name for this illness, but aspects of these recommendations have been scrutinized by patients and
scientists.

Purpose:
It is possible that both empiric and consensus approaches could be used to help settle some of these diagnostic challenges. Using patient samples collected in the USA, Great Britain, and Norway (N = 556), the current study attempted to categorize patients using more general as well as more restricted case definitions.

Results:
Overall, the outcomes suggest that there might be four groupings of patients, with the broadest category involving those with chronic fatigue (N = 62), defined by six or more months of fatigue which cannot be explained by medical or psychiatric conditions. A second category involves those patients who have chronic fatigue that can be explained
by a medical or psychiatric condition (N = 47).

A third category involves more specific criteria that have been posited both by the IOM report, Canadian Clinical Case criteria, ME-ICC criteria and a more empiric approach. These efforts have specified domains of substantial reductions of activity, post-exertional malaise, neurocognitive  impairment, and sleep dysfunction (N = 346). Patients with these characteristics were more functionally impaired than those meeting just chronic fatigue criteria, p < .05. Finally, those meeting even more restrictive ME criteria proposed by Ramsay, identified a smaller and even more impaired group, p < .05.

Conclusion:
It is important that scientists world-wide develop consensus on how to identify and classify patients using clinical and research criteria, and ultimately develop subtypes within such categories.

Case definitions integrating empiric and consensus perspectives, by Leonard A. Jason, Stephanie McManimen, Madison Sunnquist, Abigail Brown, Jacob Furst, Julia L. Newton & Elin Bolle Strand in Fatigue: Biomedicine, Health & Behavior, January 19, 2016

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Overview of evidence for biochemical muscle abnormality in CFS

Review article abstract:

Introduction: Chronic fatigue syndrome/ Myalgic Encephalomyelitis (CFS/ME) is a
debilitating disorder of unknown aetiology and is characterised by severe disabling fatigue in  the absence of an alternative diagnosis.

Historically, there has been a tendency to draw psychological explanations for the origin of fatigue, however this model is at odds with findings that fatigue and accompanying symptoms may be explained by central and peripheral pathophysiological mechanisms, including effects of the immune, oxidative, mitochondrial and neuronal pathways. For example, patient descriptions of their fatigue regularly cite difficulty in maintaining muscle activity due to perceived lack of energy.

This narrative review examines the literature for evidence of biochemical dysfunction in CFS/ME at the skeletal muscle level.

Methods: This narrative review examines literature following searches of PUB MED,
MEDLINE and Google scholar, using key words such as (e.g. CFS,ME, Immune,
autoimmune, mitochondria, muscle, acidosis).

Results: Studies show evidence for skeletal muscle bio-chemical abnormality in CFS/ME
patients. Following a low-level repeat exercise protocol CFS/ME patients exhibited a
significantly greater muscular acidosis in addition to a slowed time to recovery from acidosis. There is also evidence for impaired AMPK activation following electrical pulse stimulation in CFS/ME patient myotube samples.

Discussion: Bio-energetic peripheral muscle dysfunction is evident in CFS/ME, with a
tendency towards an over-utilisation of the lactate dehydrogenase pathway during low-level exercise, in addition to delayed acid clearance post-exercise. AMPK activation is impaired in CFS/ME myotube samples following electrical pulse stimulation. Potentially, these biochemical abnormalities may lead to the perception of severe muscular fatigue in CFS/ME.

Understanding muscle dysfunction in Chronic Fatigue Syndrome, by Gina Rutherford, Philip Manning, and Julia L Newton in Journal of aging research, 13 January 2016

 

 

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Chronic fatigue affects 1.9% of 16 year olds & is more common with family adversity

Research abstract:

BACKGROUND: In the Avon Longitudinal Study of Parents and Children (ALSPAC) birth cohort, chronic disabling fatigue lasting ≥6 months affected 1.3% of 13-year-olds, was equally common in boys and girls, and became more prevalent with increasing family adversity.

METHODS: ALSPAC data were used to estimate the prevalence of chronic fatigue syndrome (CFS) at age 16 years, defined by parental report of unexplained disabling fatigue lasting ≥6 months. We investigated gender and a composite 14-item family adversity index as risk factors. School absence data were obtained from the National Pupil Database. Multiple imputation was used to address bias caused by missing data.

RESULTS: The prevalence of CFS was 1.86% (95% confidence interval [CI]: 1.47 to 2.24). After excluding children with high levels of depressive symptoms, the prevalence was 0.60% (95% CI: 0.37 to 0.84). Authorized school absences were much higher (mean difference: 35.6 [95% CI: 26.4 to 44.9] half-day sessions per academic year) and reported depressive symptoms were much more likely (odds ratio [OR]: 11.0 [95% CI: 5.92 to 20.4]) in children with CFS than in those without CFS. Female gender (OR: 1.95 [95% CI: 1.33 to 2.86]) and family adversity (OR: 1.20 [95% CI: 1.01 to 1.42] per unit family adversity index) were also associated with CFS.

CONCLUSIONS: CFS affected 1.9% of 16-year-olds in a UK birth cohort and was positively associated with higher family adversity. Gender was a risk factor at age 16 years but not at age 13 years or in 16-year-olds without high levels of depressive symptoms.

Chronic Fatigue Syndrome at Age 16 Years, by Simon M. Collin, Tom Norris, Roberto Nuevo, Kate Tilling, Carol Joinson, Jonathan A.C. Sterne, Esther Crawley in Pediatrics,
February 2016

University of Bristol press release, 25 January: 1 in 50 16-year-olds affected by chronic fatigue syndrome

In what is believed to be the biggest study of chronic fatigue syndrome (CFS) – also known as myalgic encephalomyelitis (ME) – in children to date, researchers at the University of Bristol, have found that almost 2 per cent of 16-year-olds have CFS lasting more than six months and nearly 3 per cent have CFS lasting more than three months (the UK definition). Those with CFS missed, on average, more than half a day of school every week.

The researchers looked at the condition in 5,756 participants in Children of the 90s and found that girls were almost twice as likely as boys to have the condition. This is because CFS/ME became more common in girls between 13 and 16 but not in boys. Children from families experiencing greater adversity were more likely to have the condition, dispelling the commonly held view that CFS is a ‘middle-class’ illness or ‘yuppie-flu’. The definition of adversity included poor housing, financial difficulties and a lack of practical and/or emotional support for the mother.

The researchers point out that the diagnosis of CFS was not made by a doctor but is based on responses to questionnaires sent to both the teenagers and their parents.

BBC news reports Dr Crawley as saying that “research showed it could be successfully treated with cognitive behavioural therapy (CBT) in young people.” No link to this research was given: Chronic fatigue syndrome on rise among 16-year-olds 25 January 2016

Western Daily Press, 25 January 2016:‘Yuppie flu’ taking toll on teens

Times, 25 January 2016: One in 40 teenage girls has chronic fatigue

Sun, 25 January 2016: New research reveals that yuppie flu hits one in 50 teenagers

 

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Dr Sarah Myhill interview: energy and mitochondrial function

Niki Gratrix interviews Dr Sarah Myhill, published on 6 Oct 2015

Covered in this interview from the Abundant Energy Summit: rebooting Mitochondrial Function and nutrient status for optimum energy.  Lasts 40 minutes with powerpoint slides.

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