New name & diagnostic criteria for ME/CFS recommended in US

Posted on 02/10/2015 by wames

The committee formed by the Institute of Medicine in the USA to examine diagnostic criteria in ME/CFS released its 280-page report on Tuesday 10th February.

Its primary message is that the disease is serious, chronic, complex and multisystem, and that it frequently and dramatically limits the activities of affected patients. Accordingly, the committee has recommended:

  • New diagnostic criteria, which it says are more focused on the core symptoms than many other definitions.
  • A new name for the disorder – ‘Systemic Exertion Intolerance Disease’ (SEID). The committee points out that the name ‘CFS’ perpetuates misunderstanding of the illness and dismissive attitudes from health care providers and the public, and it believes that “SEID captures the central characteristic of the disease – that exertion of any sort can adversely affect several organ systems and many aspects of patients’ lives, often seriously and for long periods”.
  • A new code for the disorder in the International Classification of Diseases (ICD-10), not linked with ‘chronic fatigue’ or ‘neurasthenia’ as at present.
  • An official toolkit appropriate for screening and diagnosing patients, that could be developed centrally by the US Department of Health and Human Services.

As president of the Institute of Medicine Victor Dzau says, “The diagnostic criteria offered in this report are intended to promote prompt diagnosis for patients and enhance treatment, as well as improve public understanding of the disease.” The committee recognises, however, that new criteria will only improve diagnosis and care if healthcare providers actually USE them. This will be the big challenge for the future.

[Summary supplied by ME Research UK]

Further Reading
Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness (full report). Institute of Medicine 2015.

Press release: Chronic fatigue syndrome/myalgic encephalomyelitis is a legitimate disease that needs proper diagnosis and treatment. Institute of Medicine press release 2015 Feb 10.

Viewpoint: Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness. Journal of the American Medical Association, 2015 Feb 10.

Chronic Fatigue Syndrome gets a new name’, New York Times blogs, report by David Tuller, 2015 Feb 10.

Goodbye chronic fatigue syndrome, hello SEID By Jon Cohen, 10 February 2015

US panel proposes new name and diagnostic criteria for chronic fatigue syndrome, by Michael McCarthy, BMJ 2015; 350:h775

Report recommends calling illness systemic exertion intolerance disease to reflect severity of physical symptoms, Al Jazeera, February 10, 2015 by Natasja Sheriff

Chronic fatigue is real, serious and needs a new name, panel says, NBC News, Maggie Fox

Chronic fatigue syndrome is a real condition, not a psychological illness, expert panel says, By Lenny Bernstein February 10 Washington Post

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Should those with lifelong fatigue be excluded from a diagnosis of ME?

Posted on 02/05/2015 by wames

Research abstract:

The case definitions for chronic fatigue syndrome (CFS) and chronic fatigue syndrome/Myalgic Encephalomyelitis (ME) stipulate that the experience of lifelong fatigue is an exclusionary criterion (Carruthers et al., 2003 ; Fukuda et al., 1994 ).

This article examines the lifelong fatigue construct and identifies potential validity and reliability issues in using lifelong fatigue as an exclusionary condition.

Participants in the current study completed the DePaul Symptom Questionnaire (Jason et al., 2010 ), and responses were examined to determine if they had experienced lifelong fatigue. This article discusses the extensive process that was needed to confidently discern which participants had or did not have lifelong fatigue.

Using the most rigorous standards, few individuals were classified as having lifelong fatigue. In addition, those with and without lifelong fatigue had few significant differences in symptoms and functional areas. This article concludes with a recommendation that lifelong fatigue should no longer be used as an exclusionary criterion for CFS or ME/CFS.

Complications in operationalizing lifelong fatigue as an exclusionary criterion, by M Sunnquist, LA Jason, A Brown, M Evans, A Berman, in J Prev Interv Community 2015;43(1):42-53

 

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Fatigue in MS and ME: similarities and differences

Posted on 02/04/2015 by wames

Cort Johnson in his blog Health rising asks if the fatigue found in MS and ME is similar or different:

Simply looking at the symptoms indicated that MS is primarily a fatiguing disorder, and that MS patients may, in fact, experience more fatigue than ME/CFS patients.  They do experience some PEM, but nothing like what shows up in ME/CFS.

“Fatigue is obviously present in Chronic Fatigue Syndrome, but it’s more of
a post-exertional malaise disorder. This study suggests Post-Exertional Relapse Syndrome would have been a better name for ME/CFS than Chronic
Fatigue Syndrome.

But what do the genes say?

Would these differences show up in the gene expression results?

They would..

The PEM Genes – Where ME/CFS and MS Part Ways

The expression levels of two genes (P2X4/TRPVI) that bounced up immediately
after exercise in the ME/CFS group, and then stayed elevated for 48 hours
were associated with post-exertional malaise. One of them, P2X4, was
directly associated with both the increased fatigue and pain experienced
after exercise in the ME/CFS patients. These are muscle metabolite sensing
genes that assess the levels of factors associated with muscle fatigue and
damage.

After exercise the MS patients looked more like healthy controls than the
ME/CFS patients. The levels of the metabolite sensing genes actually dropped
in both the MS and healthy controls eight hours after exercise and then
rebounded to normal levels. The Lights called this response evidence of a
“well-regulated sensory pathway” .

That sensory pathway looks more than a little dysregulated in ME/CFS.

Read more: A “Fatigue” Disorder No More? – What Multiple Sclerosis Taught Us
About Fatigue and Chronic Fatigue Syndrome

 

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Chronic fatigue in MS improved by idebenone

Posted on 02/04/2015 by wames

Research abstract:

Objective:

The evaluation of the dynamics of asthenia, chronic fatigue syndrome, emotional disorders and quality of life of patients with multiple sclerosis (MS) and to explore the possibility of using idebenon (noben) in treatment of these impairments.

Material and methods

We studied 35 patients, 18 men and 17 women, with MS (mean age 36.4±8.86 years, mean disease duration 10.33±6.07 years); 83% of patients had remitting type and others – secondary progressive type. Along with neurological examination, we used the Modified Fatigue Impact Scale (MFIS 21), the Hospital Anxiety and Depression Scale and a quality of life questionnaire (EQ5D).

Patients had marked asthenia and chronic fatigue at baseline. The old age of the patients and duration of MS and its severity according to EDSS predicted the higher levels of asthenia, chronic fatigue and anxiety with depression and lower quality of life on EQ5D. All patients received noben in dosage 90 mg daily (30 mg 3 times a day) during 6 months.

Results and conclusion

Idebenon (noben) reduced the severity of chronic fatigue syndrome, asthenia and depression in MS patients. The dose used in the study may be regarded as the optimal dose that provides best efficacy with minimal side-effects.

[Asthenia, emotional disorders and quality of life of patients with multiple sclerosis.] by AV Lebedeva et al in Zh Nevrol Psikhiatr Im S S Korsakova. 2014;114(10 Vypusk 2 Rasseiannyi skleroz):99-104. [Article in Russian],

 

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More severe symptoms & impairment in ME than in CFS confirmed

Posted on 02/04/2015 by wames

Research abstract

A revised sudden onset case definition for Myalgic Encephalomyelitis (ME) has been developed (Jason, Damrongvachiraphan, etal., 2012) based on past case definitions.

In a prior study, Jason, Brown, and colleagues (2012 ) compared patients recruited using the 1994 case definition of chronic fatigue syndrome (CFS) to contrast those meeting criteria for the revised ME criteria. They found that this revised ME case definition identified patients with more functional impairments and physical, mental, and cognitive problems than those meeting the CFS criteria.

The study by Jason, Brown, etal. ( 2012 ) only selected individuals who first met the CFS criteria, and it only relied on one Chicago-based data set. The current study replicated this comparison with two distinct data sets with different case ascertainment methods.

Results indicate that the ME criteria identified a group of patients with more functional disabilities as well as more severe post-exertional malaise symptoms.

Chronic fatigue syndrome versus sudden onset myalgic encephalomyelitis by LA Jason, M Evans, A Brown, M Sunnquist, JL Newton in J Prev Interv Community 2015;43(1):62-77

 

 

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Neuro-immune pathophysiology of fatigue

Posted on 02/03/2015 by wames

Research abstract

Many patients with systemic immune-inflammatory and neuro-inflammatory disorders, including depression, rheumatoid arthritis, systemic lupus erythematosus, Sjögren’s disease, cancer, cardiovascular disorder, Parkinson’s disease, multiple sclerosis, stroke, and chronic fatigue syndrome/myalgic encephalomyelitis, endure pathological levels of fatigue.

The aim of this narrative review is to delineate the wide array of pathways that may underpin the incapacitating fatigue occurring in systemic and neuro-inflammatory disorders. A wide array of immune, inflammatory, oxidative and nitrosative stress (O&NS), bioenergetic, and neurophysiological abnormalities are involved in the etiopathology of these disease states and may underpin the incapacitating fatigue that accompanies these disorders.

This range of abnormalities comprises: increased levels of pro-inflammatory cytokines, e.g., interleukin-1 (IL-1), IL-6, tumor necrosis factor (TNF) α and interferon (IFN) α; O&NS-induced muscle fatigue; activation of the Toll-Like Receptor Cycle through pathogen-associated (PAMPs) and damage-associated (DAMPs) molecular patterns, including heat shock proteins; altered glutaminergic and dopaminergic neurotransmission; mitochondrial dysfunctions; and O&NS-induced defects in the sodium-potassium pump.

Fatigue is also associated with altered activities in specific brain regions and muscle pathology, such as reductions in maximum voluntary muscle force, downregulation of the mitochondrial biogenesis master gene peroxisome proliferator-activated receptor gamma coactivator 1-alpha, a shift to glycolysis and buildup of toxic metabolites within myocytes. As such, both mental and physical fatigue, which frequently accompany immune-inflammatory and neuro-inflammatory disorders, are the consequence of interactions between multiple systemic and central pathways.

The Neuro-Immune Pathophysiology of central and peripheral fatigue in systemic immune-inflammatory and neuro-immune diseases, by G Morris, M Berk, P Galecki, K Walder, M Maes in Mol Neurobiol 2015 Jan 20. [Epub ahead of print]

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Body awareness interventions could improve quality of life in CFS & FM

Posted on 01/30/2015 by wames

Review abstract:

OBJECTIVES:

Patients with long-lasting pain problems often complain of lack of confidence and trust in their body. Through physical experiences and reflections they can develop a more positive body- and self-experience. Body awareness has been suggested as an approach for treating patients with chronic pain and other psychosomatic conditions. The aim of this systematic review is to assess the effectiveness of body awareness interventions (BAI) in fibromyalgia (FM) and chronic fatigue syndrome (CFS).

METHODS:

Two independent readers conducted a search on Medline, Cochrane Central, PsycINFO, Web of knowledge, PEDro and Cinahl for randomized controlled trials.

RESULTS:

We identified and screened 7.107 records of which 29 articles met the inclusion criteria. Overall, there is evidence that BAI has positive effects on the Fibromyalgia Impact Questionnaire (FIQ) (MD -5.55; CI -8.71 to -2.40), pain (SMD -0.39, CI -0.75 to -0.02), depression (SMD -0.23, CI -0.39 to -0.06), anxiety (SMD -0.23, CI -0.44 to -0.02) and Health Related Quality of Life (HRQoL) (SMD 0.62, CI 0.35-0.90) when compared with control conditions. The overall heterogeneity is very strong for FIQ (I(2) 92%) and pain (I(2) 97%), which cannot be explained by differences in control condition or type of BAI (hands-on/hands-off). The overall heterogeneity for anxiety, depression and HRQoL ranges from low to moderate (I(2) 0%-37%).

CONCLUSIONS:

Body awareness seems to play an important role in anxiety, depression and HRQoL. Still, interpretations have to be done carefully since the lack of high quality studies.

Effectiveness of body awareness interventions in fibromyalgia and chronic fatigue syndrome: A systematic review and meta-analysis, by I Courtois, F Cools, J Calsius in J Bodyw Mov Ther. 2015 Jan;19(1):35-56. [Epub 2014 Apr 18]

 

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Symptoms predating CFS could give useful information

Posted on 01/30/2015 by wames

Research abstract

The Fukuda et al. (1994) criteria for chronic fatigue syndrome (CFS) specifies that a symptom can only be included within a diagnosis if it is experienced concurrently or following the onset of fatigue.

In order to investigate this issue, participants provided information on persisting symptoms (lasting greater than six months) and whether those symptoms occurred prior to, concurrently, or following the onset of their fatigue.

More symptoms were experienced after the fatigue onset than prior to the fatigue onset; however, a considerable number of participants reported experiencing persisting symptoms prior to the onset of CFS. Particularly, rates of hay fever and asthma were higher prior to the illness.

Investigating symptoms prior to the onset of the illness might provide investigators with ways to better understand the etiology of this illness.

An investigation of symptoms predating CFS onset, by M Evans, M Barry, Y Im, A Brown, LA Jason in J Prev Interv Community 2015; 43(1):54-61

 

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Self-regulation, physical activity and unexplained chronic fatigue

Posted on 01/30/2015 by wames

Research abstract

Unexplained Chronic Fatigue (CF) is of unknown aetiology, but research suggests a multifactorial nature in which biological/physical, psychological and social fators interact.

Treatment approaches for CF target mainly perpetuating factors of fatigue chronicity, such as lack of physical activity. This thesis describes a brief self-regulation-based intervention targeting physical activity for patients with CF.

Prior to this intervention study we conducted a series of studies that were important for the development of the trial:

(1) a validation of a measure of fatigue severity for the language and population in which we intended to implement the intervention,

(2) a comparison of clinical characteristics and behavioural and cognitive determinants of CFS in a Dutch and a Portuguese patient sample, and

(3) a systematic review and meta-analysis of behavioural interventions with a graded activity component conducted with CF patients.

In a randomized controlled trial (n=91), the self-regulation based intervention led to significant sustained effects (1 year) on fatigue severity, quality of life and physical activity. Sustained benefits on fatigue severity were partially explained by progress on a personal physical activity goal, and use of self-regulation skills. Findings are discussed in terms of its implications for practice, methodological considerations and avenues for future research.

Concluding Remarks
The scope of this thesis was on the behavioral and selfregulatory factors associated with health behavior change and chronic fatigue management.

Informed by preliminary investigations, we developed and implemented a self-regulation based intervention targeting physical activity for CF(S) patients, the “4-STEPS to control your Fatigue”.

The 4-STEPS program, which was tested in a multicentre randomised controlled trial, lead to significant and sustained improvements in fatigue and in patients’ functioning and quality of life. The 4-STEPS also produced significant effects on the use of self-regulation skills and physical activity, especially progress towards a personal physical activity goal, partially explaining the sustained effects of the intervention upon fatigue severity.

Nonetheless, the 4-STEPS also presented limited effects for some of the outcomes assessed.

The limitations of each of the six empirical studies that were reviewed in this chapter point at the need to conduct more research on the behavioural and psychological mechanisms involved in CF(S) management. In spite of these limitations, we believe that this thesis positively contributes to the advance of
disease management in CF(S) patients.

Self-regulation, physical activity and unexplained chronic fatigue: from determinants to interventions, by Marta Moreira Marques, Phd thesis Leiden University, The Netherlands, January 13, 2015

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Baduanjin Qigong exercise can improve sleep disturbance in fatigue type illnesses

Posted on 01/29/2015 by wames

Research abstract

Objectives:

To evaluate the effectiveness of Baduanjin Qigong exercise on sleep, fatigue, anxiety, and depressive symptoms in chronic fatigue syndrome- (CFS-) like illness and to determine the dose-response relationship.

Methods:

One hundred fifty participants with CFS-like illness (mean age = 39.0, SD = 7.9) were randomly assigned to Qigong and waitlist. Sixteen 1.5-hour Qigong lessons were arranged over 9 consecutive weeks. Pittsburgh Sleep Quality Index (PSQI), Chalder Fatigue Scale (ChFS), and Hospital Anxiety and Depression Scale (HADS) were assessed at baseline, immediate post treatment, and 3-month post treatment. The amount of Qigong self-practice was assessed by self-report.

Results:

Repeated measures analyses of covariance showed a marginally non significant (P = 0.064) group by time interaction in the PSQI total score, but it was significant for the “subjective sleep quality” and “sleep latency” items, favoring Qigong exercise.

Improvement in “subjective sleep quality” was maintained at 3-month post treatment. Significant group by time interaction was also detected for the ChFS and HADS anxiety and depression scores.

The number of Qigong lessons attended and the amount of Qigong self-practice were significantly associated with sleep, fatigue, anxiety, and depressive symptom improvement.

Conclusion:

Baduanjin Qigong was an efficacious and acceptable treatment for sleep disturbance in CFS-like illness. This trial is registered with Hong Kong Clinical Trial Register: HKCTR-1380.

Qigong exercise alleviates fatigue, anxiety, and depressive symptoms, improves sleep quality, and shortens sleep latency in persons with chronic fatigue syndrome-like illness, JS Chan et al in Evid Based Complement Alternat Med. 2014;  [Epub 2014 Dec 25]

You tube video showing the movements

 

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