Can you help design a Patient Reported Experience Measure (PREM) for neurological conditions?

If you have, or are affected by, a neurological condition, the Wales Neurological Alliance wants your views on how best to capture health care experiences of people who are affected by neurological conditions through creating a fit-for-purpose, Wales wide survey.

With your valuable input, together we aim to have a Patient Reported Experience Measure (PREM) that can be administered, collected and collated on a national level that will be able to identify inequalities in neurological health care provision across Wales, support evaluation of services and demonstrate change over time.

Through this initial online questionnaire, you will have the opportunity to engage in shaping the final PREM survey by sharing your thoughts on the following key areas:

  • Navigation (making the survey flow easily between sections)
  • What is a realistic number of questions
  • Accessibility – Online, paper-format or both
  • Inclusivity – Language(s) & other formats
  • How can we best engage with people with, and affected by, neurological conditions to complete the survey

Responses will remain anonymous and ultimately feed into developing a neurological survey with the service user at its very heart.

Take the survey in English                                     Cymraeg

This initial survey will close on 30th October 2017.

We are extremely grateful for your support and thank you for taking the time to respond to this survey. We look forward to sharing the final neurological PREM survey with you in the near future.

Should you wish to further share your views and recommendations we would be delighted to conduct a telephone interview with you. Please contact: Darren Wyn Jones

07557554272     mailto:darren.wynjones@mssociety.org.uk

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Dr Martin Rhisiart ‘killed himself after ME diagnosis’

BBC News article, 5 September 2017: Dr Martin Rhisiart ‘killed himself after ME diagnosis’

A university professor who acted as an economics adviser for the UK government killed himself after being diagnosed with ME, an inquest in Cardiff has heard. Dr Martin Rhisiart, 43, a professor of strategy and innovation at the University of South Wales, was found dead at his home in June. The well-known TV and radio pundit also had anxiety and
depression. The inquest heard he received the ME diagnosis weeks before his death. ME, also known as myalgic encephalomyelitis, is a long-term neurological condition that causes persistent fatigue.


In a written statement, his wife Elena Rhisiart, 44, said: ‘In the last few weeks of his life he suffered exhaustion. ‘Martin’s behaviour changed and he was having feelings of hopelessness. He didn’t sleep for two weeks.’

Coroner Philip Spinney said: ‘He worked long hours and suffered anxiety.  We heard a few weeks prior to his death he had been diagnosed with myalgic encephalomyelitis.’ He recorded a conclusion of suicide.

Throughout his career, Dr Rhisiart worked on a ground-breaking piece of research for the UK Commission for Employment. He was also a member of the Welsh Government’s Innovation Advisory Council for Wales.

Mail online, 6 Sep 2017: Father-of-three economics professor, 43, who advised government hanged himself after being diagnosed with ME

  • Dr Martin Rhisiart exhausted by the illness and had not slept for two weeks
  • Dr Rhisiart had been suffered anxiety and depression, an inquest had heard
  • Professor was found hanged in the garage of his family home in Cardiff, Wales
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Mental health resources now also available in Welsh

Families affected by ME or CFS may also on occasion find themselves under great psychological stress and could benefit with some help. Mind Cymru publishes information and offers support at all levels.

Yn Mind Cymru rydym wedi ymrwymo i sicrhau bod mwy o’n hadnoddau gwybodaeth am iechyd meddwl ar gael yn Gymraeg.

At Mind Cymru we’re committed to making more of our mental health information resources available in the Welsh language.

 

Rydym newydd ychwanegu pum tudalen adnoddau Cymraeg newydd at ein gwefan fel y gall pobl gael gafael ar wybodaeth am y materion canlynol yn Gymraeg.

We’ve just added 5 new Welsh language resource pages to our website so that people can access information on the following subjects in Welsh:

  1. Iechyd meddwl amenedigol ac iselder ôl-enedigol/Perinatal mental health and postnatal depression
  2. Sut i ymdopi ag unigrwydd/Loneliness
  3. Triniaethau siarad/Talking treatments
  4. Paranoia
  5. Hunan-niweidio./Self-harm.

Mae’r rhain yn ymuno â’n naw adnodd gwybodaeth sy’n bodoli eisoes ac sydd ar gael yn Gymraeg:

 These join our nine existing information resources that are already available in Welsh:

  1. Gorbryder a phyliau o banig/Anxiety and panic attacks
  2. Straen/Stress
  3. Anhwylder Personoliaeth Ffiniol (BPD)/Borderline Personality Disorder (BPD)
  4. Teimladau hunanladdol/Suicidal feelings
  5. Gofyn am help ar gyfer problem iechyd meddwl/Seeking help for a mental health problem
  6. Iselder/Depression
  7. Hunan-barch/Self-esteem
  8. Deubegynol/Bipolar
  9. Anhwylderau personoliaeth./Personality disorders

Gallwch weld ein holl adnoddau Cymraeg yn

You can view all of our welsh language resources at

http://www.mind.org.uk/information-support/gwybodaeth-iechyd-meddwl-gymraeg

Rhannwch yr adnoddau hyn gyda phawb rydych chi’n credu y gallant eu helpu. Hoffem sicrhau bod pawb sydd angen yr adnoddau hyn yn gallu cael gafael arnynt.
Os hoffech gael rhagor o wybodaeth, ffoniwch ni ar 02920 346589 neu e-bostiwch digitalwales@mind.org.uk

Please share these resources with everyone who you think they might help. We would like to make sure that everyone who needs these resources has access to them.
If you would like any more information on the resources please give us a call on 02920 346589 or email digitalwales@mind.org.uk

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Is poor sleep pummeling the immune system in ME/CFS & FM

Simmaron Research blog post by Cort Johnson, 29 August 2017: Is Poor Sleep Pummeling the Immune System in ME/CFS and Fibromyalgia? A Vicious Circle Examined

 

Most people with chronic fatigues syndrome (ME/CFS) and fibromyalgia (FM) know the consequences of poor sleep – the fatigue and pain, the difficulty concentrating, the irritability and more. Sleep is when our body rejuvenates itself; no sleep – no rejuvenation. Given how important sleep is to our health, it’s no surprise that poor sleep is the first symptom many ME/CFS and FM doctors focus on in.

The effects of poor sleep go beyond just feeling bad, though. It turns out that poor sleep can have significant effects on our immune system – effects, interestingly, which are similar to what’s been found in the immune systems of people with ME/CFS and FM. There’s no evidence yet that ME/CFS and FM are sleep disorders – that the problems ME/CFS and FM patients face are caused by poor sleep – but depriving the body of sleep can cause one immunologically, at least, look like someone with these diseases.

Why Sleep Is Important for Health: A Psychoneuroimmunology Perspective
Michael R. Irwin. Annu Rev Psychol . 2015 January 3; 66: 143–172. doi:10.1146/annurev-psych-010213-115205.

Irwin begins his review on sleep and immunology by noting the “explosion” in our understanding of the role sleep plays in health over the past decade. First, Irwin demolishes the idea that sleep studies are effective in diagnosing insomnia or sleep disturbances other than sleep apnea. Far more effective than a one or two-night sleep study is a home based sleep actigraph “study” which estimates sleep patterns and circadian rhythms over time and is coupled with a sleep diary.

In fact, Irwin points out that the diagnosis of insomnia in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is based solely on patient reports of difficulties going to sleep, maintaining sleep, having non-restorative sleep (common in ME/CFS) and problems with daytime functioning (fatigue, falling asleep, need to nap). (Problems with daytime functioning are actually required for an insomnia diagnosis).

Several effective sleep questionnaires exist including the Insomnia Severity Index, which assesses sleep quality, fatigue, psychological symptoms, and quality of life and the Pittsburgh Sleep Quality Index, a 19-item self-report questionnaire that evaluates seven clinically derived domains of sleep difficulties (i.e., quality, latency, duration, habitual efficiency, sleep disturbances, use of sleeping medications, and daytime dysfunction).

Assess Your Sleep Quality

The Immune System and Sleep
The immune system is vast and incredibly complex and has it’s own extensive set of regulatory factors, but it itself is regulated by two other systems, the HPA axis and the sympathetic nervous system. Both are involved in the stress response and both are effected in ME/CFS and FM. One – the HPA axis – is blunted in ME/CFS while the other – the sympathetic nervous system – is over-activated.

Poor sleep, it turns out activates both system. The HPA axis is generally thought to be blunted not activated in the morning in ME/CFS patients but the sympathetic nervous system (SNS), on the other hand, is whirring away at night (when it should be relaxing) in both FM and ME/CFS. (Having our “fight or flight” system acting up at night is probably not the best recipe for sleep.) ‘

Sympathetic nervous system activation, in fact, was the only factor in one Australian study which explained the poor sleep in ME/CFS. The authors of a recent FM/autonomic nervous system study went so far as to suggest that going to sleep with FM was equivalent to undergoing a stress test (!). Heart rates, muscle sympathetic nervous activation, and other evidence of an activated sympathetic nervous system response made sleep anything but restful for FM patients. In fact, the authors proposed sleep problems could be a heart of fibromyalgia.

Many questions have involved the roles pathogens play in ME/CFS and FM. That’s intriguing given the almost universally poor sleep found in the disorders and role recent studies indicate that sleep plays priming the immune systems pump to fight off invaders. During sleep pathogen fighting immune cells move to the lymph nodes where they search for evidence of pathogens. If pathogens are present those immune cells mount a furious (and metabolically expensive) immune response.

Metabolism is a big issue in ME/CFS right now but guess what? Poor sleep also appears to interfere with producing the metabolic reserves our immune cells need to fight off infections.

We often think of inflammation in negative terms but the pro-inflammatory cytokines our immune cells produce are necessary to fight off invaders. Reductions of a key pro-inflammatory cytokine called IL-6 during poor sleep hampers our immune system’s ability to destroy pathogens.

Getting your circadian rhythms (sleep and wake times) out of whack isn’t doing you any good either. Having insomnia or altered sleep patterns (very late bedtimes) appears to cause deficits in two hormones (growth hormone (GH) and prolactin) produced during early sleep which enhance T-cell activity and promote pathogen defense. That suggests that anyone with an altered circadian rhythm (i.e. late bedtimes) might want to do their best to get to bed earlier.

While pro-inflammatory cytokine production at night primes the immune system to fight off pathogens, the day time is a different story. Chronic sleep deprivation is associated increased daytime levels of several immune and endothelial factors ((IL-6, TNF) and endothelial markers (E-selectin, sICAM-1) that are associated with chronic inflammation.

One study found IL-6 levels actually became flipped in sleep deprived people; they were low at night (thereby hampering their pathogen fighting ability) and high during the day (adding to inflammation).

The situation may be even worse if a sleep deprived person is fighting off an infection.  One study found skyrocketing levels of damaging pro-inflammatory cytokines when sleep deprived people were given a toxin (LPS) associated with infections. Those damaging cytokines did not show up in healthy people. That suggested that besides the infection they probably weren’t doing too well at fighting off, sleep-deprived people now had inflammation to deal with.

As it often happens, women seem to have gotten the short end of the stick with immune issues and it’s no different with sleep. Women appear to be more susceptible than men to inflammation that occurs as the result of poor sleep; it’s women, not men, who show elevations of pro-inflammatory cytokines the day after getting less than eight hours of sleep. (Men show elevations of pro-inflammatory cytokines after getting less than six hours of sleep).

Many people with ME/CFS/FM get too little sleep but sleeping more than normal, it turns out, is not such a great idea either. People sleeping much longer than normal tend to show the same kinds of elevations of pro-inflammatory cytokines as do people who get too little sleep.

The C-reactive Protein Sleep, ME/CFS and Fibromyalgia Connection
CRP is associated with a variety of inflammatory states resulting from infection, cancer and stress. Increased levels of the inflammatory marker, C-reactive protein (CRP), are increasingly being associated with sleep disturbance.

The CRP – sleep connection is intriguing given Jarred Younger’s preliminary finding of increased C-reactive protein (CRP) levels in a subset of ME/CFS patients, and a recent finding in increased CRP in FM.

See Early Results Suggest Two Radically Different Immune Subsets Present in Chronic Fatigue Syndrome (ME/CFS)

Those findings might not be so surprising. Ten days or so of partial sleep deprivation in healthy controls caused “robust” increases in CRP levels. In fact, the CRP-poor sleep connection is so robust that simply scoring above five on the Pittsburg Sleep Quality Index (PSQI >5) strongly suggests that your CRP levels are elevated. A huge nurses study (n=10,908) found that non-restorative sleep – probably the most common sleep issue in ME/CFS/FM – was associated with increased CRP levels even in these healthy individuals.

The early or innate immune response has long been thought to play a special role in ME/CFS. This immune response involving NK cells, neutrophils, macrophages, dendritic cells and others constitutes the immune system’s first defense against pathogens. Immune cells involved in the early immune response called monocytes/macrophages also play a key role in producing chronic inflammation.

NK cell activity hits a low during sleep but then begins to rise. That the rise is blunted in people with poor sleep probably comes as no surprise to NK cell challenged ME/CFS patients.

ME/CFS isn’t the only disease associated with NK cell problems; depression is as well and having poor sleep increases your risk of being depressed twofold. Plus, for reasons that are not understood, poor sleep appears to trigger stress and depression initiated reductions in NK cell activity; i.e. if you’re having poor sleep and are under considerable stress or are depressed – it’s likely that your NK cells are punking out when it’s time to defend the body from invaders.

We know that having a chronic illness increases ones chances of becoming depressed markedly, but so does poor sleep. In fact, Irwin reports that having insomnia for over a year increases your risk of becoming depressed 14-fold. That finding is leading some of the more progressive psychologists to focus on preventing or ameliorating sleep problems.

Sleep disturbance also induces a shift toward a type-2 immune response often seen in ME/CFS and in allergic and autoimmune diseases. Just one poor night’s sleep the night before a person is given a vaccine is enough markedly reduce the effectiveness of that vaccine. A study showing just how frighteningly malleable the immune system can be to stressors such as poor sleep found that a 50% reduction in the effectiveness of an influenza vaccine persisted over a year. Even after three doses of the vaccine and a booster shot were given adults getting fewer than six hours of sleep a night still received less protection from a hepatitis B vaccination than normal.

The common cold, of course, is no joke to some people with chronic fatigue syndrome (ME/CFS) and FM when it lingers and lingers. Studies suggest that poor and fragmented sleep – which is, of course, common in ME/CFS/FM – significantly increases one’s susceptibility to the common cold. If you’re catching a lot of colds or if they linger and linger, poor sleep could be one reason why.

What To Do?
OK – so poor sleep places a big hurt on our immune system’s effectiveness. What to do about it?  No studies, unfortunately, have examined the effect of sleep drugs on immune factors so we’re not going to go there.

Several studies have, however, assessed the efficacy of stress reduction therapies. Dr. Irwin notes reports that practices such as cognitive behavioral therapy, Tai Chia and yoga which tamp down sympathetic nervous system hyper-arousal can help improve immune functioning. Tai chi has even been found to improve vaccine effectiveness and reduce inflammation.

Other studies point to the ability of mindfulness based meditations and/or yoga to reduce the cytokine levels and pro-inflammatory gene expression caused by poor sleep.  One remarkable study showed a 50% reduction in CRP levels in insomnia patients after a year of cognitive behavioral therapy.

Check out more sleep resources including sleep tests and sleep aids in Health Rising’s Sleep Resource Section

Poor sleep, then, doesn’t just make you feel tired and irritable; it takes a pretty good whack at your immune system, as well.  Getting better sleep through better sleep hygiene, supplements (melatonin), calming botanicals (valerian root, L-theanine, passiflora, Melissa, Scutellaria, etc.), stress reduction techniques (meditation, mindfulness, meditation), and sleep medications might just give your immune system a boost.

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Invisible illness increases risk of suicidal ideation: the role of social workers in preventing suicide

Article abstract:

Invisible illness increases risk of suicidal ideation: The role of social workers in preventing suicide, by Cathy L Pederson, Kathleen Gorman-Ezell, Greta Hochstetler-Mayer in Health & Social Work, June 14, 2017 [Preprint]

Many chronic, invisible illnesses that involve chronic pain – fibromyalgia, complex regional pain syndrome, postural orthostatic tachycardia syndrome, and myalgic encephalomyelitis – can greatly affect both physical and mental health.

Although these illnesses are not fatal, they severely affect function and quality of life (Pederson & Brook, 2017). It is interesting to note that these disorders disproportionately affect women (Alonso & Hernan, 2008; Branco et al., 2009; Carew et al., 2009), who are often thought to exaggerate symptoms and may not be taken seriously by the medical community.

One study showed that nearly 50 percent of women with postural orthostatic tachycardia syndrome fell into the high-risk group for suicide (Pederson & Brook, 2017). Clearly, we need to care more for these chronically ill women to decrease suicide risk.

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Antibodies to adrenergic & muscarinic receptors in ME/CFS

Blog post, by Paolo Maccallini, 29 August 2017: Antibodies to adrenergic and muscarinic receptors in ME/CFS,

During the Community Symposium on the molecular basis of ME/CFS two different groups of researchers reported on the increased level of antibodies to beta adrenergic and muscarinic receptors in sera from ME/CFS patients vs healthy controls (Figure 1). These new data have been collected independently by Alan Light (University of Utah) and Jonas Bergquist (Uppsala Universitet). Bergquist also reported that these autoantibodies can’t be found in cerebrospinal fluid from ME/CFS patients.

 

 

 

Figure 1. Two slides from the symposium: on the left data from Uppsala Universitet, on the right data from a group of patients studied by Alan Light (University of Utah).

Read more about what is already known and Alan Light’s theory of Molecular Mimicry

 

 

 

 

 

 

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Sleep patterns among patients with chronic fatigue

Research Abstract:

Sleep patterns among patients with chronic fatigue: A polysomnography-based study, by Evelina Pajediene, Indre Bileviciute-Ljungar and Danielle Friberg in The Clinical Respiratory Journal [Version online: 2 AUG 2017]

Objectives:
The purpose of this study was to detect treatable sleep disorders among patients complaining of chronic fatigue by using sleep questionnaires and polysomnography.

Methods:
Patients were referred to hospital for investigations and rehabilitation because of a suspected diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The criteria for further referral to full-night polysomnography (PSG) were symptoms of excessive daytime sleepiness and/or tiredness in the questionnaires.

Results:
Of a total of 381 patients, 78 (20.5%) patients underwent PSG: 66 women and 12 men, mean age 48.6 years, standard deviation ±9.9 years. On the basis of the PSG, 31 (40.3%) patients were diagnosed with obstructive sleep apnoea, 7 (8.9%) patients with periodic limb movement disorder, 32 (41.0%) patients with restless legs syndrome and 54 (69.3%) patients had one or more other sleep disorder. All patients were grouped into those who fulfilled the diagnostic criteria for ME/CFS (n = 55, 70.5%) and those who did not (n = 23, 29.5%). The latter group had significantly higher respiratory (P = .01) and total arousal (P = .009) indexes and a higher oxygen desaturation index (P = .009).

Conclusions:
More than half of these chronic fatigue patients, who also have excessive daytime sleepiness and/or tiredness, were diagnosed with sleep disorders such as obstructive sleep apnoea, periodic limb movement disorder and/or restless legs syndrome. Patients with such complaints should undergo polysomnography, fill in questionnaires and be offered treatment for sleep disorders before the diagnose ME/CFS is set.

 

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ME/CFS patients’ reports of symptom changes following CBT, GET & pacing treatments

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys, by Keith Geraghty, Mark Hann, Stoyan Kurtev in Journal of Health Psychology, 29 August 2017 [Preprint]

 

Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome.

This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling.

Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%-35%), graded exercise therapy brings about large negative responses in patients (54%-74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%-82%).

Article Conclusion:

This article presents results pertaining to ME/CFS patient reports of symptom changes following CBT, GET or PT. While a small percentage of patients report some benefit from either CBT or GET, the majority experience no benefit.

In contrast, pacing brings about the greatest positive impact with the least negative reactions. GET brings about a substantive deterioration in symptoms for almost half of patients and it is the least favoured treatment, compared with pacing, which is most favoured by patients. Adding GET in combination with other treatments worsens outcomes and contributes to increases in illness severity, whereas adding pacing in combination improves outcomes.

These findings conflict with evidence from clinical trials that report CBT and GET to be superior treatments, but are consistent with findings from multiple patient surveys that span 15 years and multiple countries.

Therapists’ views have an impact on patient outcomes, with views of ME/CFS being a physical illness associated with better outcomes than views of ME/CFS being psychological illness. Further research is needed to validate these findings and to investigate if pacing is a viable alternative treatment approach in ME/CFS.

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Report of the Community Symposium on the Molecular Basis of ME/CFS

The first Open Medicine Foundation Community Symposium on the Molecular Basis of ME/CFS

On August 12, 2017, the Community Symposium on the Molecular Basis of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) convened ~ 300 researchers, clinicians, patients, caregivers, families, and advocates at Stanford University – and nearly 3000 more via livestream.

Find out what happened

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Scientific progress stumbles without a valid case definition

OUP blog post, by Leonard A. Jason, August 20th 2017: Scientific progress stumbles without a valid case definition

Current estimates from the Centers for Disease Control and Prevention (CDC) of the number of people in the United States with chronic fatigue syndrome (CFS) increased from about 20,000 to as many as four million within a ten-year period. If this were true, we would be amidst an epidemic of unprecedented proportions. I believe that these increases in prevalence rates can be explained by unreliable case definitions. For example, in 1994, the CDC’s case definition did not require patients to have core symptoms of the CFS.

Making matters worse, in 2005, in an effort to operationalize their inadequate case definition, the CDC broadened the case definition so that ten times as many patients would be identified. Even though these estimates were challenged as bringing into the CFS case definition many who did not have this illness such as Major Depressive Disorder, as late as 2016, the CDC re-affirmed the merit in this broader case definition.

Another misguided effort occurred in 2015, when the Institute of Medicine (IOM) developed a revised clinical case definition that at least did specify core symptoms, but unfortunately also eliminated almost all exclusionary conditions, so those who had had previously been diagnosed with other illnesses such as Melancholic Depressive Disorders, could now be classified as meeting the new IOM criteria.

This case definition has the unfortunate consequence of again broadening the types of patients that will now be identified, thus their effort also will inappropriately select many patients with other diseases as meeting the new IOM criteria. Making matters even worse, the clinical case definition was not designed to be used for research purposes, but it is clearly being used in this way, and one group of researchers has already inaccurately reported that the new clinical case definition is as effective at selecting patients as research case definitions.

This comedy of errors becomes even more tragic with the recent development of a new pediatric case definition. As with past efforts, data were not collected to field test this new set of criteria. Even worse, medical personnel are asked to make decisions regarding symptoms without being providing any validated questionnaires, and this has the effect of introducing unacceptable levels of diagnostic unreliability. Scoring rules are so poorly developed that guidelines indicate that a child needs to have most symptoms at a moderate or severe level, but in reality, according to the flawed scoring rules of this case definition, youth can be classified as having the illness even if they report all symptoms as mild.

These criteria further suggest that “personality disorders” should be assessed in children, as these disorders are listed as psychiatric exclusionary conditions; however, personality disorders cannot be diagnosed (or reliably assessed) prior to the age of 18, as personality characteristics are not fully developed until adulthood. Finally, these authors also require the youth to have at least six months of illness duration, whereas the Canadian criteria and others suggest that children with three months duration can be diagnosed with the illness. Other significant limitation of this primer have been mentioned by others.

In summary, these authors failed to incorporate standard psychometric procedures that include first specifying symptoms and logical scoring rules, developing consistent ways to reliably assess these symptoms, and then collecting data to ensure that the proposed criteria are reliable and valid.

When a field of inquiry is either unable or unwilling to develop a valid case definition, as has occurred with CFS, the repercussions are catastrophic for the research and patient community. In a sense like a house of cards, if the bottom level is not established with a sturdy foundation, all upper levels of cards are vulnerable to collapse.

Science is based on having sound case definitions that allow investigators to determine who has and does not have an illness.

Having porous and invalid case definitions, whether clinical or research, affects not only prevalence estimates of CFS, but also has dire consequences for treatment approaches, as when individuals who have solely affective disorders are misclassified as having CFS, and when they improve from psychological interventions, it is easy to erroneously conclude that CFS is a psychiatric illness, which further stigmatizes patients.

Leonard A. Jason is a professor of clinical and community psychology at DePaul University, director of the Center for Community Research, and the author of Principles of Social Change and co-editor of the Handbook of Methodological Approaches to Community-Based Research: Qualitative, Quantitative, and Mixed Methods.

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