Interdisciplinary group treatment may improve quality of life in CFS/ME

Posted on 07/29/2016 by wames

Research highlights:

  • Interdisciplinary group treatment may improve quality of life in CFS/ME.
  • Psychological Flexibility (PF) has applied utility in the treatment of CFS/ME.
  • Changes in PF activity/occupational engagement suggest greatest benefit in CFS/ME.

Research  abstract:

Objective: Psychological Flexibility (PF) is a relatively new concept in physical health. It can be defined as an overarching process of being able to accept the presence of wanted/unwanted experiences, choosing whether to change or persist in behaviour in response to those experiences. Associations between processes of PF and quality of life (QoL) have been found in long-term health conditions such as chronic pain, PF has not yet been applied to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

Methods: Changes in PF, fatigue severity and QoL were examined in one hundred and sixty-five patients with CFS/ME engaged in a six-week outpatient interdisciplinary group treatment programme. Participants were assessed using a series of self-report measures at the start of the start (T1) and end of a six-week programme (T2) and at six months follow up (T3).

Results: Significant changes in PF and QoL were observed from pre-treatment (T1) to post treatment follow-up (T2 and T3); changes in fatigue severity were observed from T1 to T3 only. Controlling for fatigue severity, changes in the PF dimension of activity/ occupational engagement were associated with improvement in QoL at six month follow up (T3) but not at six weeks post programme (T2).

Conclusion: Findings indicate an interdisciplinary group treatment approach for people with CFS/ME may be associated with improved QoL, processes of PF and fatigue severity, supporting a link between PF and long term health conditions. Results highlight links between PF and patient QoL in CFS/ME and the value of interdisciplinary treatment approaches in this patient population.

Enhanced psychological flexibility and improved quality of life in chronic fatigue syndrome/ myalgic encephalomyelitis, by Sarah Densham,Deborah Williams, Anne Johnson, Julie M. Turner-Cobb in Journal of Psychosomatic Research Vol 88, Sep 2016, Pp 42–47 [Published online: July 2016]

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Non-restorative sleep in FM & CFS

Posted on 07/29/2016 by wames

Prohealth blog post, by Celeste Cooper, 21 May 2016: “Wake Up Sleepy Head” – Non-Restorative Sleep in FM and CFS

“Are you deprived?”

Disordered sleep is prevalent in both fibromyalgia and chronic fatigue syndrome/ myalgic encephalomyelitis. Sleep deprivation can affect your mental, physical, emotional, and spiritual health. Lack of restorative sleep weakens the immune response leaving us more susceptible to other diseases and disorders.

I understand only too well the effects of insomnia and disordered sleep. Sometimes, many times, despite doing everything right, a road block occurs and we literally lose our map to life. This is why I think it is important, in light of the more recent research, that we all have a sleep study, so integrative therapies can be implemented.

What is a sleep disorder?

Sleep disorders are characterized by different circumstances. Sleep apnea, for instance, is an obstructive sleep disorder and can co-exist with FM and CFS/ME. When this happens a person is deprived of oxygen, which is needed for cellular metabolism and energy.

Disordered sleep, meaning that the normal cycles of sleep are not present, not maintaining sleep, and delayed sleep onset have been consistently reported by fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) patients.

Here is a link from About.com that has a really good explanation of the sleep cycles, though these seem to be changing. One thing we expect in science is that nothing remains the same.

Many of us seldom, if ever, enter deep stages of sleep, so I am including a link regarding slow wave sleep (SWS, which may in the future be defined as one stage).

It seems to me, anecdotally and according to some studies, people with non-restorative sleep, an overlapping symptom between FM and CFS/ME, have a disordered or disrupted sleep cycle. As if that is not enough, there are other co-existing conditions that seem to cluster with both FM and CFS/ME, such as teeth grinding (bruxism), periodic limb movement (PLM), TMJ, sleep starts, and delayed sleep phase (inability to fall or maintain sleep). These can and do play a role in sleep quality, and I am advocating that an assessment for myofascial trigger points, RLS and PLM be included in the proposed diagnostic criteria for FM and a better explanation for “jaw pain.”

Sleep deprivation can impede healing and interfere with our body’s immune system, not to mention agitation and sleep deprivation psychosis. This might explain why so many of us have difficulty fighting off viruses and recovering from trauma, including the micro-trauma we experience in our everyday lives that is repaired during normal sleep.

So what do we do?

According to the Wikipedia link, it seems alcohol (I am assuming not too much, though they don’t state such), THC, SSRIs, and possibly Xyrem can promote slow wave sleep (SWS), and benzodiazepines, such as Klonopin, can inhibit SWS.

I bring up Klonopin specifically because it is often prescribed to help with the periodic limb movement (PLM) seen in the FM and CFS/ME patient. This leads me to conclude that the treatment for PLM may also be an aggravating factor for lack of SWS. Other treatment suggestions for PLM include sleeping pills, anti-seizure medications and narcotic pain killers. On the flip side, I have heard that the addition of a benzodiazepine such as Ativan (Lorazepam) might help with myofascial trigger point relaxation. Don’t give up, continue to work with your doctor to find the right treatment for you. People with hypertension know the trial and error involved in finding the right blood pressure medication; the same holds true for us. Not only are we genetically different, we all have our own grocery cart of co-existing conditions.

If I didn’t learn anything else from this investigation, it is that your best bet is to find a good sleep specialist that understands FM and CFS/ME. You and he/she can work together.

There is something you can do to promote your circadian rhythm, which is
orchestrated by two markers, melatonin concentration and core body temperature. Have a bedtime ritual.

A Helpful Acronym for Sleep Hygiene ©

Schedule bedtime and stick to it
Limit physical activity before bedtime
Use comfort measures
Meditate (count those lambs)
Breathe
Eliminate stress and food (including caffeine 2-3 hours prior to bedtime)
Remember nothing—clear your mind (journal your to-do list so you can let go)

*(Excerpt from the book, copyrighted material)

I hope you will take a minute to stop by Arthritis Today (link below) and leave a comment regarding restless leg syndrome, sleep disruption and assessment in diagnosis of fibromyalgia.

More detailed information of good sleep hygiene is provided in the book.

Harmony and Hope, Celeste

Resources:

Arthritis Today. Restless Leg Syndrome Linked to Fibromyalgia by Jennifer Davis (accessed, 11/18/10)
http://www.arthritistoday.org/news/restless-leg-syndrome-fibromyalgia097.php

Cooper and Miller. Integrative Therapies for fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont, 2010.

A. R. Gold, F. Dipalo, M. S. Gold, and J. Broderick, “Inspiratory airflow dynamics during sleep in women with fibromyalgia,” Sleep 27, no. 3 (2004): 459–66.

M. Irwin, J. McClintick, C. Costlow, M. Fortner, J. White, and J. C. Gillin, “Partial night sleep deprivation reduces natural killer and cellular immune responses in humans,” Federation of American Societies for Experimental Biology 10, no. 5 (1996): 643–53.

M. Irwin, J. McClintick, C. Costlow, M. Fortner, J. White, and J. C. Gillin, “Partial night sleep deprivation reduces natural killer and cellular immune responses in humans,” Federation of American Societies for Experimental Biology 10, no. 5 (1996): 643–53.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

B. Kundermann, J. C. Krieg, W. Schreiber, and S. Lautenbacher, “The effect of sleep deprivation on pain,” Pain Research & Management 9, no. 1 (2004): 25–32.

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning (sleepiness and fatigue) in less well-defined chronic rheumatic diseases with particular reference to the alpha-delta NREM sleep anomaly,” Sleep Medicine 1, no. 3 (2000): 195–207.

H. Moldofsky, “The significance, assessment, and management of nonrestorative sleep in fibromyalgia syndrome,” CNS Spectrums 13, no. 3 (2008): 22–26.

M. K. Millott and R. M. Berlin, “Treating sleep disorders in patients with fibromyalgia: exercise, behavior, and drug therapy may all help,” Journal of Musculoskeletal Medicine 14 (1993): 25–28.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

A. Korszun, L. Sackett, Lundeen, E. Papadopoulos, C. Brucksch, L. Masterson, N. C. Engelberg, E. Hause, M. A. Demitrack, and L. Crofford, “Melatonin levels in women with fibromyalgia and chronic fatigue syndrome,” Journal of Rheumatology 26, no. 12 (1999): 2675–80.

H. K. Moldofsky, “Disordered sleep in fibromyalgia and related myofascial pain condition,” Journal of Clinical Dentistry, North America 45, no. 4 (2001): 701–13.

H. Moldofsky, “The assessment and significance of the sleep/waking brain in patients with chronic widespread musculoskeletal pain and fatigue syndromes,” Journal of Musculoskeletal Pain 15 Suppl. no. 13 (2007): [Myopain 2007 poster].

H. K. Moldofsky, “Disordered sleep in fibromyalgia and related myofascial pain condition,” Journal of Clinical Dentistry, North America 45, no. 4 (2001): 701–13.

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning, sleepiness and fatigue, in well-defined chronic rheumatic diseases,” Journal of Clinical Sleep Medicine 1, no. 3 (2000): 179–93.

J. C. Rains and D. B. Penzien, “Sleep and chronic pain: challenges to the alpha- EEG sleep pattern as a pain specific sleep anomaly,” Journal of Psychosomatic Research 54, no. 1 (2003): 77–83.

E. R. Unger, R. Nisenbaum, H. Moldofsk, A. Cesta, C. Sammut M. Reyes, and W. C. Reeves, “Sleep assessment in a population-based study of chronic fatigue syndrome,” BMC Neurology 4, no. 1 (2004): 6.

E. Vazquez-Delgado, J. Schmidt, C. Carlson, R. DeLeeuw, and J. Okeson, “Psychological and sleep quality differences between chronic daily headache and temporomandibular disorders patients,” Cephalgia 24, no. 6 (2004): 446–54.

Celeste Cooper, RN, is a frequent contributor to ProHealth.  She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com

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Variable effects of clonidine treatment in CFS

Posted on 07/29/2016 by wames

Research abstract:

Clonidine, an α2-adrenergic receptor agonist, decreases circulating norepinephrine and epinephrine, attenuating sympathetic activity.

Although catechol-O-methyltransferase (COMT) metabolizes catecholamines, main effectors of sympathetic function, COMT genetic variation effects on clonidine treatment are unknown. Chronic fatigue syndrome (CFS) is hypothesized to result in part from dysregulated sympathetic function.

A candidate gene analysis of COMT rs4680 effects on clinical outcomes in the Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial (NorCAPITAL), a randomized double-blinded clonidine versus placebo trial, was conducted (N=104).

Patients homozygous for rs4680 high-activity allele randomized to clonidine took 2500 fewer steps compared with placebo (P_interaction=0.04). There were no differences between clonidine and placebo among patients with COMT low-activity alleles. Similar gene-drug interactions were observed for sleep (P_interaction=0.003) and quality of life (P_interaction=0.018).

Detrimental effects of clonidine in the subset of CFS patients homozygous for COMT high-activity allele warrant investigation of potential clonidine-COMT interaction effects in other conditions.

Genetic variation in catechol-O-methyltransferase modifies effects of clonidine treatment in chronic fatigue syndrome, by KT Hall, J Kossowsky, TF Oberlander, TJ Kaptchuk, JP Saul, VB Wyller, E Fagermoen, D Sulheim, J Gjerstad, A Winger, KJ Mukama in the Pharmacogenomics Journal [online publication 26 July 2016]

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Long-Term Consequences of Cryptosporidium and Giardia Gastroenteritis

Posted on 07/28/2016 by wames

Research abstract:

Cryptosporidium and Giardia are protozoan intestinal parasites which may present as asymptomatic infections in humans or cause severe and prolonged diarrhea. Studies over the last two decades show an association between these two pathogens, and various sequelae after the parasite has been successfully eradicated either by medication or by the host immune system.

In endemic countries, Giardia infection has been associated with later wasting and poor cognitive function, while growth faltering, stunting, and reduced physical fitness have been shown after Cryptosporidium infections. More recently, outbreaks of Giardia and Cryptosporidium in non-endemic settings have shown association between infections with these pathogens and long-term sequelae including not only long-lasting abdominal symptom but also extra-intestinal symptoms such as chronic fatigue and joint pain.

More studies are needed to confirm these associations and determine mechanisms and causality in order to identify effective prevention and treatment alternatives.

Long-Term Consequences of Cryptosporidium and Giardia Gastroenteritis by Kurt Hanevik Protozoa (R Mejia, Section Editor) in Current Tropical Medicine Reports, pp 1–5 [published online: 22 June 2016]

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Kinesiophobia and maladaptive coping strategies prevent improvement in pain

Posted on 07/27/2016 by wames

Research abstract:

Many patients with chronic fatigue syndrome (CFS) and/or fibromyalgia (FM) have no understanding of their condition, leading to maladaptive pain cognitions and coping strategies.

These should be tackled during therapy, e.g. by providing pain neurophysiology education (PNE). Although the positive effects of PNE are well-established in chronic pain populations, it remains unclear why some patients benefit more than others.

Identifying predictive factors for therapy would add great value to clinical practice.

Kinesiophobia and maladaptive coping strategies prevent improvements in pain catastrophizing following pain neuroscience education in fibromyalgia/chronic fatigue syndrome: Pooled results from 2 randomized controlled trials, by A. Malfliet, J. Van Oosterwijck, M. Meeus, B. Cagnie, L. Danneels, M. Dolphens, R. Buyl, J. Nijs in Manual Therapy, September 2016

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Q fever fatigue syndrome research review

Posted on 07/27/2016 by wames

Review abstract:

BACKGROUND: Long-term fatigue with detrimental effects on daily functioning often occurs following acute Q-fever. Following the 2007-2010 Q-fever outbreak in the Netherlands with over 4000 notified cases, the emphasis on long-term consequences of Q-fever increased.

The aim of this study was to provide an overview of all relevant available literature, and to identify knowledge gaps regarding the definition, diagnosis, background, description, aetiology, prevention, therapy, and prognosis, of fatigue following acute Q-fever.

DESIGN: A systematic review was conducted through searching Pubmed, Embase, and PsycInfo for relevant literature up to 26th May 2015.

References of included articles were hand searched for additional documents, and included articles were quality assessed.

RESULTS: Fifty-seven articles were included and four documents classified as grey literature. The quality of most studies was low.

The studies suggest that although most patients recover from fatigue within 6-12 months after acute Q-fever, approximately 20% remain chronically fatigued. Several names are used indicating fatigue following acute Q-fever, of which Q-fever fatigue syndrome (QFS) is most customary. Although QFS is described to occur frequently in many countries, a uniform definition is lacking. The studies report major health and work-related consequences, and is frequently accompanied by nonspecific complaints. There is no consensus with regard to aetiology, prevention, treatment, and prognosis.

CONCLUSIONS: Long-term fatigue following acute Q-fever, generally referred to as QFS, has major health-related consequences. However, information on aetiology, prevention, treatment, and prognosis of QFS is underrepresented in the international literature. In order to facilitate comparison of findings, and as platform for future studies, a uniform definition and diagnostic work-up and uniform measurement tools for QFS are proposed.

Fatigue following Acute Q-Fever: A Systematic Literature Review, by Morroy G, Keijmel SP, Delsing CE, Bleijenberg G, Langendam M, Timen A, Bleeker-Rovers CP in PLoS One 2016 May 25;11(5)

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Vitamin D supplement advice for people with ME

Posted on 07/26/2016 by wames

Following advice from Public Health England that everyone should consider taking vitamin D supplements in autumn and winter, Dr Charles Shepherd of the ME Association comments:

“We often flag up the fact that people with ME/CFS, especially those who are partially or totally housebound, are at increased risk of developing vitamin D deficiency – mainly due to the lack of exposure to sunlight (which helps with vitamin D production). This may also be compounded by lack of foods that are good sources of vitamin D in their diet (i.e. oily fish, eggs, fortified breakfast cereals).

“This new advice from Public Health England – that everyone should consider taking a vitamin D supplement during the autumn and winter months – is therefore very relevant as vitamin D is essential for good muscle and bone health. Any deficiency of vitamin D in ME/CFS could add to the problems of muscle weakness that is already occurring.

“On a personal basis, I will now be following this advice and taking a vitamin D supplement during the autumn and winter months.”

BBC news article: Vitamin D supplements ‘advised for everyone’

ME association blog post: MEA comment on new public health advice about Vitamin D supplements, 21 July 2016

 

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A review of attitudes, beliefs & knowledge of health care professionals about CFS/ME

Posted on 07/26/2016 by wames

Review abstract:

Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) is a relatively unknown disease and is often referred to as a diagnosis of exclusion. Diagnostic tests are not available for this disease because a single empirical cause or marker has yet to be discovered. This means that diagnosis and management is almost solely based on the skill of the health care professional to notice the signs and symptoms of the disease, the subtleties of which often only come with experience.

While some studies have assessed the knowledge, attitudes and beliefs of health care professionals (HCP) towards CFS/ME, none have reviewed all the studies focused on health care professionals to aide students and inexperienced professionals to avoid negative behaviours that might lead to a CFS/ME patient not being diagnosed as having CFS/ME.

This review contains three parts. Part A is the protocol for the review. This will highlight the background of CFS/ME knowledge and outline the review’s methodology. The review will take the form of a qualitative systematic review. Six databases will be searched with the relevant keywords and search terms outlined in the protocol.

Appropriate articles will be selected based on the inclusion and exclusion criteria defined in the protocol. Part B is the literature review of the existing research available in the field of CFS/ME, the knowledge of the disease and the attitudes and beliefs of health care professionals about CFS/ME. It will provide a background for the full systematic review in Part C.

This review will detail what is known about CFS/ME as a disease, report on potential causal mechanisms for CFS/ME as a disease and report on the scope of the disease in epidemiological terms. Part C is the full systematic review. It follows the previous section in the description of the background as well as outlining the methodology followed. The results of the search are then reviewed and discussed in detail.

DISCUSSION
The results have clearly shown the importance that knowledge, attitudes and beliefs have on the HCPs practice. There have been many links between the availability of knowledge and how it is transferred to HCPs and the inherent attitudes or beliefs that HCPs then develop from that knowledge base. These links became quite evident with the development of four main sub-themes. These sub themes are:

  • the use of a biomedical model by HCPs,
  • the need for guidelines,
  • labelling of patients and
  • empathy towards patients.

What are the attitudes, beliefs and knowledge of health care professionals about chronic fatigue syndromes and fibromyalgia: a systematic review to guide curriculum development, MSc thesis by Garth Reypert, University of Cape Town, South Africa, 13, Feb 2016. [Published online: July 18, 2016]

 

 

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Altered neural networks in adolescent CFS

Posted on 07/25/2016 by wames

Research abstract:

Neural network investigations are currently absent in adolescent chronic fatigue syndrome (CFS). In this study, we examine whether the core intrinsic connectivity networks (ICNs) are altered in adolescent CFS patients.

Eighteen adolescent patients with CFS and 18 aged matched healthy adolescent control subjects underwent resting-state functional magnetic resonance imaging (rfMRI). Data was analyzed using dual-regression independent components analysis, which is a data-driven approach for the identification of independent brain networks.

Intrinsic connectivity was evaluated in the default mode network (DMN), salience network (SN), and central executive network (CEN). Associations between network characteristics and symptoms of CFS were also explored. Adolescent CFS patients displayed a significant decrease in SN functional connectivity to the right posterior insula compared to healthy comparison participants, which was related to fatigue symptoms.

Additionally, there was an association between pain intensity and SN functional connectivity to the left middle insula and caudate that differed between adolescent patients and healthy comparison participants.

Our findings of insula dysfunction and its association with fatigue severity and pain intensity in adolescent CFS demonstrate an aberration of the salience network which might play a role in CFS pathophysiology.

Aberrant Resting-State Functional Connectivity in the Salience Network of Adolescent Chronic Fatigue Syndrome, by Wortinger LA, Endestad T, Melinder AM, Øie MG, Sevenius A, Bruun Wyller V in PLoS One. 2016 Jul 14;11(7)

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High risk of post-infectious irritable bowel syndrome in patients with Clostridium difficile

Posted on 07/24/2016 by wames

Research abstract:

Background:

Infectious enteritis is a commonly identified risk factor for irritable bowel syndrome (IBS). The incidence of Clostridium difficile infection (CDI) is on the rise. However, there is limited information on post-infectious IBS (PI-IBS) development following CDI and the host- and infection-related risk factors are not known.

Aim:

To determine the incidence and risk factors for PI-IBS following CDI.

Methods:

A total of 684 cases of CDI identified from September 2012 to November 2013 were surveyed. Participants completed the Rome III IBS questionnaire and details on the CDI episode. Predictive modelling was done using logistic regression to evaluate risk factors for PI-IBS development.

Results:

A total of 315 CDI cases responded (46% response rate) and 205 were at-risk (no pre-CDI IBS) for PI-IBS development. A total of 52/205 (25%) met the Rome III criteria for IBS ≥6 months following CDI.

IBS-mixed was most common followed by IBS-diarrhoea. In comparison to those without subsequent PI-IBS, greater percentage of PI-IBS patients had CDI symptoms >7 days, nausea, vomiting, abdominal pain during CDI, anxiety and a higher BMI. Using logistic regression, CDI symptoms >7 days [Odds ratio (OR): 2.96, P = 0.01], current anxiety (OR: 1.33, P <0.0001) and a higher BMI (OR: 1.08, P = 0.004) were independently associated with PI-IBS development; blood in the stool during CDI was protective (OR: 0.44, P = 0.06).

Conclusions:

In this cohort study, new-onset IBS is common after CDI. Longer CDI duration, current anxiety and higher BMI are associated with the diagnosis of C. difficile PI-IBS. This chronic sequela should be considered during active management and follow-up of patients with CDI.

High risk of post-infectious irritable bowel syndrome in patients with Clostridium difficile infection, by A. Wadhwa et al in Alimentary Pharmacology & Therapeutics [Published online: 22 JUL 2016]

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