Multidisciplinary rehabilitation treatment is not effective for ME/CFS: a review of the FatiGo trial

Posted on 08/15/2018 by wames

Multidisciplinary rehabilitation treatment is not effective for myalgic encephalomyelitis/chCronic fatigue syndrome: A review of the FatiGo trial, by Mark Vink and Alexandra Vink-Niese in Health Psychol Open. 2018 Jul-Dec; 5(2): 2055102918792648 [Published online 2018 Aug 6]

 

Research abstract:
The FatiGo trial concluded that multidisciplinary rehabilitation treatment is more effective for chronic fatigue syndrome/myalgic encephalomyelitis in the long term than cognitive behaviour therapy and that multidisciplinary rehabilitation treatment is more cost-effective for fatigue and cognitive behaviour therapy for quality of life.

However, FatiGo suffered from a number of serious methodological flaws. Moreover, it ignored the results of the activity metre, its only objective outcome. This jeopardizes the validity of FatiGo. Its analysis shows that there was no statistically significant difference between multidisciplinary rehabilitation treatment and cognitive behaviour therapy and neither are (cost-)effective.

FatiGo’s claims of efficacy of multidisciplinary rehabilitation treatment and cognitive behaviour therapy for chronic fatigue syndrome/myalgic encephalomyelitis are misleading and not justified by their results.

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System reset? Study suggests Pro-Inflammatory / Autoimmune reset in ME/CFS

Posted on 08/14/2018 by wames

Simmaron Research blog post, by Cort Johnson, 4 August 2018: System Reset? Study Suggests Pro-Inflammatory / Autoimmune Reset Occurred in Chronic Fatigue Syndrome (ME/CFS)

Epigenetics research holds the fascinating possibility of figuring out what shifted at the very beginning of chronic fatigue syndrome (ME/CFS). For many with ME/CFS a sudden change occurred – some sort of biological reset quickly happened – which never relinquished itself.

Finding out what “reset” occurred is what epigenetics is all about. Epigenetics identifies changes in the expression of our genes that occur after we meet up with biological stressors such as pathogens, drug, toxin or even foods.

Most of our genes that produce proinflammatory cytokines, for instance, have a kind of a lock on them. Removing that lock leaves them free to express themselves and leaves us open to poor health.

Epigenetics explores how the biological challenges we encounter in life can remove those locks (or add to them) resulting in an entirely new genetic landscape – one that could perhaps cause something like ME/CFS.

Many people’s ME/CFS/FM starts with an infection, and viruses can exert major epigenetic changes to our genome. Herpes simplex virus (the virus Dr. Pridgen is targeting in fibromyalgia) engineers changes to our genome which help the virus avoid destruction and enhance its replication. Those changes include a suppression of our immune system, which can result in an increased risk of cancer.

What goes around comes around, though. Epigenetic News recently reported that an epigenetic modifying cancer drug was able to return the parts of the immune system that the herpes simplex virus had disturbed to normal. The drug was able to effectively fill in the immune hole created by the herpes virus by boosting a number of immune factors (IFN-a, IL-8, IL-6, transcription factors, stress response factors). Mouse studies revealed that the drug also reduced reactivation of the virus.

That suggests that some similar drugs now in clinical trials could help in the fight against

Unleashing the IL2R gene could contribute to inflammation (including neuroinflammation), thyroid disease and autoimmunity

herpes and other viruses or could perhaps simply return to normal epigenetically modified genes that have suppressed immune functioning.

“A new class of antivirals based on this study might be useful for patients who are resistant to existing antivirals like acyclovir and ganciclovir….. (or in) viral infections for which there aren’t pharmaceuticals to boost an individual’s immune response.” Dr Kristie

If epigenetics turns out to play the major role in ME/CFS that it does in cancer and other diseases, a cancer drug could someday be in store for ME/CFS treatment.

Read more about epigenetics and ME, & the research of Dr Klimas’ group

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M.E.: ‘an insane idea’ – an animation by Alexandra Hohner

Posted on 08/10/2018 by wames

M.E. – ‘an insane idea’ – an animation by Alexandra Hohner

An award winning short animation by Alexandra Hohner uses interviews with a young man who developed ME/CFS following a giardia infection.

She says ” The experiment is based on the idea to create a simulation of Olly’s photophobia (sensitivity to light)”

The animation’s character, Olly, talks about the cognitive issues of ME and after describing how it feels to overdo things and relapse, he laughs and says: “It’s crazy. The whole idea of it is insane”

 

 

“I can’t keep talking to you, because I can’t get the words out. I can’t think of the right words and when you have that kind of a crash, it’s like 30 points being knocked off your IQ. Basically you go stupid and emotional.”

“I never realised that a noise could feel painful”

Watch the 3 minute video

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Visual aspects of reading performance in ME

Posted on 08/09/2018 by wames

Visual aspects of reading performance in Myalgic Encephalomyelitis (ME), by Rachel Wilson, Kevin B. Paterson, Victoria A. McGowan, Claire Hutchinson in Frontiers in Psychology [Preprint July 26, 2018]

Research abstract:

People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) report vision-related reading difficulty, although this has not been demonstrated objectively.

Accordingly, we assessed reading speed and acuity, including crowded acuity and acuity for isolated words using standardised tests of reading and vision, in 27 ME/CFS patients and matched controls.

We found that the ME/CFS group exhibited slower maximum reading speed, and had poorer crowded acuity than controls.

Moreover, crowded acuity was significantly associated with maximum reading speed, indicating that patients who were more susceptible to visual crowding read more slowly.

These findings suggest vision-related reading difficulty belongs to a class of measureable symptoms for ME/CFS patients.

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August 8th 2018: Understanding & Remembrance Day for Severe ME

Posted on 08/08/2018 by wames

August 8th, 2018: Understanding and Remembrance Day for Severe ME, by Jody Smith in Phoenix Rising blog, 4 Aug 2018


Can you read these words I’ve written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn’t see or hear me. I’d be behind a closed door in my bed, trying to block out any sound or light.

Even if you were in the same house with such a person you might not see or hear them. They are likely busy focusing on breathing in and out. You’d be surprised how much work that can be when you’re this ill. They are trying to live through the next second, minute, hour … day … year … It takes everything they’ve got.

I have never been this sick, more fortunate for me. But don’t kid yourself. There are so many of these invalids holding on to the shreds and threads of survival. In fact, 25% of those with ME/CFS suffer from its most severe forms. Some are able to depend on a caregiver. Many more are on their own, toughing it out.

Read full article

More information and resources for severe ME:

Stonebird

25% ME group

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GPs in Wales will soon classify ME & CFS as neurological

Posted on 08/03/2018 by wames

SNOMED now classifies ME and CFS as neurological

NHS Wales uses the SNOMED CT electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings. This replaced the READ (CTV3) coding system.

The International update of SNOMED CT was released on 31 July 2018 with a new code for CFS and and its Synonym terms – SCTID: 52702003 –  under Disorder of nervous system.  (The code for FM is 203082005 and the PVFS code remains SCTID 51771007).

The coding system is used in over 30 countries. SNOMED CT is the recommended terminology system in the UK, US, Canada, New Zealand and Australia and is in line with the WHO ICD-10 codes to make it easier to use them both together.

Thanks are due to The Countess of Mar, chair of the Forward ME Group and Suzy Chapman of DxRevisionWatch.com who have been campaigning for ME and CFS to be acknowledged as neurological.

The UK SNOMED update is due to be released in October 2018 and this is scheduled for adoption across all UK NHS clinical settings by 2020. NHS Wales acknowledges that it will take time to be in full use in Wales. In October 2017 the Welsh Government published a Statement of Intent regarding health and care data:

We are increasingly focusing standardisation effort on the quality of data captured in operational systems which has the advantage of driving up the quality of data for direct care, and for purposes beyond direct care. We now have clinical information standards, such as SNOMED CT, which are key components of electronic patient records. Such data standards will facilitate the monitoring of individual and patient population outcomes over time, and enable us to capture accurate data to use in combination with genomic data to underpin precision medicine.

However, there is little knowledge of SNOMED CT in NHS Wales and a programme
of awareness and education is required to enable this tool to be incorporated safely
and effectively into local and national information management and technology
developments.

Pulse: What GPs need to know about SNOMED CT  

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CFS & Quality of Life

Posted on 08/02/2018 by wames

Chronic fatigue syndrome and quality of life, by Deb Roberts in Patient Related Outcome Measures Vol 2018, #9, pp 253-262 [Published August 1, 2018]

Article abstract:

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient’s perspective.

One indicator of impact can be gained by measuring quality of life (QoL). By applying a
patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned. Such a tool can act therapeutically tool to promote holistic and individualized professional interventions and interval measurement can inform commissioning of specialist services.

Standard practice appears not fully to capture the experience of CFS, while a search of the literature turned up QoL patient-reported outcome tools, but failed to reveal a CFS/ME-specific measure. The author explores a valid and reliable PROM that can monitor change and evaluate the UK National Institute of Clinical Excellence rehabilitation program, as delivered by specialist National Health Service units.

An alternative, the World Health Organization’s quality-of life instrument (WHOQoL)-Bref26, is reviewed for relevance to the condition, measuring treatment outcomes and the
wider debate of measuring QoL in LTCs.

Download full article

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Hair and salivary cortisol in a cohort of women with

Posted on 08/01/2018 by wames

Hair and salivary cortisol in a cohort of women with chronic fatigue syndrome, by Megan E Roerink, Sean HPP Roerink, Nadine Skolud, Marieke E van der Schaaf, Ad RMM Hermus, Jos WM van der Meer, Hans Knoop, Urs M Nater in Hormones and Behavior Vol 103, July 2018, pp 1-6

 

Highlights:

  • Hypocortisolism has been described in CFS.
  • CFS patients have a decreased cortisol awakening response compared to healthy controls.
  • Long-term functioning of the HPA-axis has not been assessed previously in CFS.
  • There was a trend to lower hair cortisol concentrations in CFS patients.

Research abstract:

Hypocortisolism has been found in CFS patients in blood, urine, and saliva. It is unclear if hypocortisolism can also be demonstrated using long-term cortisol measurements, such as cortisol in hair. In addition, the interaction between the HPA axis and the immune system, both expected to play an important role in CFS, is unclear.

The objective of the current study was to compare hair and salivary cortisol concentrations in a cohort of female CFS patients to those in healthy controls, and to test the effect of an interleukin-1 receptor antagonist (anakinra) on the HPA axis. Salivary cortisol concentrations of 107 CFS patients were compared to 59 healthy controls, with CFS patients showing a decreased cortisol awakening response (4.2 nmol/L ± 5.4 vs 6.1 nmol/L ± 6.3, p = 0.036).

Total cortisol output during the day did not differ significantly in saliva, but there was a trend to lower hair cortisol in a subset of 46 patients compared to 46 controls (3.8 pg/mg ± 2.1 vs 4.3 pg/mg ± 1.8, p = 0.062). After four weeks of treatment with either daily anakinra (100 mg/day) or placebo, there was a slight decrease of hair cortisol concentrations in the anakinra group compared to an increase in the placebo group (p = 0.022).

This study confirms the altered dynamics of the HPA axis in a group of CFS patients, and for the first time shows that this might also be present for long-term cortisol measures.

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The putative glymphatic signature of CFS

Posted on 07/31/2018 by wames

The putative glymphatic signature of CFS: A new view on the disease pathogenesis and therapy, by Peter Wostyn, Peter Paul De Deyn in Medical Hypotheses Sept 2018, Vol 118, Pages 142–145

Abstract:

The underlying pathophysiology of chronic fatigue syndrome remains incompletely understood and there are no curative treatments for this disorder at present. However, increasing neuroimaging evidence indicates that functional and structural abnormalities exist in the brains of chronic fatigue syndrome patients, suggesting that the central nervous system is involved in this disorder and that at least some chronic fatigue syndrome patients may have an underlying neurological basis for their illness.

In the present paper, we speculate that glymphatic dysfunction, causing toxic build up within the central nervous system, may be responsible for at least some cases of chronic fatigue syndrome.

We further postulate that cerebrospinal fluid diversion such as lumboperitoneal shunting may be beneficial to this subgroup of patients by restoring glymphatic transport and waste removal from the brain. Although recent evidence indicates that at least some chronic fatigue syndrome patients may benefit from cerebrospinal fluid drainage, further studies are needed to confirm this finding and to determine whether this can be attributed to enhancement of glymphatic fluid flow and interstitial fluid clearance. If confirmed, this could offer promising avenues for the future treatment of chronic fatigue syndrome.

Clearly, given the relative invasive nature of cerebrospinal fluid diversion, such procedures should be reserved for chronic fatigue syndrome patients who are severely debilitated, or for those with severe headaches. Anyhow, it seems worthwhile to make every effort to identify new therapies for patients who suffer from this devastating disease, especially given that there are currently no effective treatments for this condition.

Read full article

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Identification of ME/CFS-associated DNA methylation patterns

Posted on 07/30/2018 by wames

Identification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-associated DNA methylation patterns, by Malav S. Trivedi, Elisa Oltra, Leonor Sarria, Natasha Rose, Vladimir Beljanski, Mary Ann Fletcher, Nancy  G. Klimas, Lubov Nathanson in PLoS One Vol 13, #7, p e0201066 [Published: July 23, 2018]

Abstract:

Background:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex
condition involving multiple organ systems and characterized by persistent/ relapsing debilitating fatigue, immune dysfunction, neurological problems, and other symptoms not curable for at least 6 months.

Disruption of DNA methylation patterns has been tied to various immune and neurological diseases; however, its status in ME/CFS remains uncertain. Our study aimed at identifying changes in the DNA methylation patterns that associate with ME/CFS.

Methods:
We extracted genomic DNA from peripheral blood mononuclear cells from 13 ME/CFS study subjects and 12 healthy controls and measured global DNA methylation by ELISA-like method and site-specific methylation status using Illumina MethylationEPIC microarrays. Pyrosequencing validation included 33 ME/CFS cases and 31 controls from two geographically distant
cohorts.

Results:
Global DNA methylation levels of ME/CFS cases were similar to those of controls. However, microarray-based approach allowed detection of 17,296 differentially methylated CpG sites in 6,368 genes across regulatory elements and within coding regions of genes. Analysis of DNA methylation in promoter regions revealed 307 differentially methylated promoters. Ingenuity pathway analysis indicated that genes associated with
differentially methylated promoters participated in at least 15 different pathways mostly related to cell signaling with a strong immune component.

Conclusions:
This is the first study that has explored genome-wide epigenetic changes associated with ME/CFS using the advanced Illumina MethylationEPIC microarrays covering about 850,000 CpG sites in two geographically distant cohorts of ME/CFS cases and matched controls. Our results are aligned with previous studies that indicate a dysregulation of the
immune system in ME/CFS. They also suggest a potential role of epigenetic de-regulation in the pathobiology of ME/CFS.

We propose screening of larger cohorts of ME/CFS cases to determine the external
validity of these epigenetic changes in order to implement them as possible diagnostic markers in clinical setting.

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