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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WAMES’ response to draft NICE ME/CFS guideline scope

Posted on 07/27/2018 by wames

NICE ME/CFS guideline consultation – WAMES’ response to draft scope

Before work on the revised guidelines for ME/CFS can commence, the scope of the discussions needs to be agreed. On 26th July 2018 WAMES submitted final comments on the proposed NICE guideline scope.

Our comments reflected the views of patients and carers in Wales and we are grateful to all who who have been in touch with us.  We asked for a number of points to be included or changed e.g.:

Description of ME

WAMES found the description of the illness to be misleading and lacking key pieces of information, which could perpetuate the difficulties GPs and others have in using the guideline to accurately identify and diagnose the condition. The description should include:

  • ME/CFS is a chronic and potentially disabling disorder causing considerable disruption to daily life, relationships, work and education which has been found to lead to  a poorer quality of life of than other chronic  illnesses  such as MS, serious depression etc.
  • The Post-exertional response is the key characteristic of ME, not fatigue i.e. Symptoms deteriorate following minor physical or mental exertion, often delayed by a day or more and taking longer than normal to recover from.
  • A wide range of symptoms are experienced, which fluctuate over the course of the illness.
  • Triggers include viral illness, reactions to medication and toxic poisoning
  • Key symptoms include unrefreshing sleep, flu-like malaise, pain, extreme exhaustion/ weakness/ fatigability, orthostatic intolerance, digestive and cognitive dysfunction

Target audience

As well as patients, carers, health and social care workers, we thought the guideline would be useful for Benefits assessors.

Research into ME/CFS

Although a lot is not known about the cause and nature of ME/CFS, we wish the scope to include a positive statement about the many preliminary findings from biomedical research and the  growing number of clues to dysfunction in a wide range of the body’s systems. This switch of emphasis from the psycho-social research will shape the attitudes of health professionals and their approach to diagnosis and management, and hopefully remove the stigma, misunderstanding and disbelief currently hampering doctor/patient relationships.

Outcomes of management and treatment

  • It is important that evidence for management and treatment approaches is based on research with well-defined participant cohorts
  • Potential for, and evidence of harm, should be considered when searching for and assessing the research evidence or effectiveness of treatment options
  • As well as measuring improvements of sleep, pain, fatigue etc. absence of relapse could be another outcome, indicating successful management of the post-exertional response
  • Improvements in function and symptoms should be measured objectively, where possible, not just by subjective questionnaires

Read the final draft scope

Read the Equality Impact Assessment

Read WAMES’ full response

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The importance of screening for suicide risk in chronic invisible illness

Posted on 07/24/2018 by wames

The Importance of Screening for Suicide Risk in Chronic Invisible Illness, by Cathy L Pedersen in Journal of Health Science & Education Vol 2(4): 1-5 2018

Abstract: 

Many people suffering from chronic invisible illnesses like chronic fatigue syndrome/ myalgic encephalomyeletis (CFS/ME), fibromyalgia, Lyme disease, and postural orthostatic tachycardia syndrome (POTS) report increased suicidal ideation and past suicide attempts compared with the general population.

A number of factors contribute to suicide risk in chronic illness. Physical factors, like sleep disturbance and pain, as well as psychosocial issues like perceived burdensomeness (feeling like a burden to others), thwarted belongingness (lack of connection to a social group), loneliness, and depression may contribute to an increased suicide risk.

Healthcare practitioners are encouraged to actively screen for suicide risk in their chronically ill patients, and have a protocol in place to refer their patients to proper community resources.

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Checking our blind spots: current status of research evidence summaries in ME/CFS

Posted on 07/23/2018 by wames

Checking our blind spots: current status of research evidence summaries in ME/CFS, by Todd E Davenport, Staci R Stevens, J Mark VanNess, Jared Stevens, Christopher R Snell in British Journal of Sports Medicine, July 2018

Editorial:

The evidence-based practice (EBP) model hierarchically organises scientific information by level, from lowly case studies to lofty systematic reviews and clinical trials. Clinical trials best influence recommendations because they putatively have the greatest internal
validity.1

This assumption is based on sound research ethics, such as scientific competence and good faith actors, as well as observed differences in outcomes. An EBP blind spot emerges when fundamental assumptions are unmet.

Based on findings of a 2018 PEDro evidence summary in BJSM 2 and elsewhere,3 it now seems clear that scientific research in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) resides in a blind spot.

The paper goes on to discuss the flawed results of the PACE trial into GET and CBT before concluding:

EBP also includes patient perspectives. We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries. Community- based participatory research designs should be elevated to ensure information flows from bedside-to-lab bench, in addition to lab bench-to-bedside. By including evidence from patients in clinical decisions and research, we can begin to address the important blind spots in how we think about and implement EBP.

Read full article

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Reduced glycolytic reserve in isolated natural killer cells from ME/CFS patients

Posted on 07/20/2018 by wames

Reduced glycolytic reserve in isolated natural killer cells from Myalgic encephalomyelitis/ chronic fatigue syndrome patients: A preliminary investigation, by Thao Nguyen, D Staines, S Johnston, S Marshall-Gradisnik in Asian Pac J Allergy Immunol. 2018 Jul 8. [Epub ahead of print]

Abstract:

BACKGROUND: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is medically unexplained post-exertional fatigue associated with significant reduction in natural killer cell (NK) cytotoxicity activity. Cytotoxic activity relies on glycolytic flux and mitochondrial respiration to fulfill energetic cellular demands. While mitochondrial dysfunction has been reported in ME/CFS patients, no previous investigation has examined the bioenergetic profile of isolated NK cells from ME/CFS patients.

OBJECTIVE: This study was to determine the metabolic function in resting NK cells from ME/CFS patients.

METHOD: Six ME/CFS patients (aged 50.33±4.95) were age and sex-matched with non-fatigued healthy controls (aged 50.00±5.04). Mitochondrial stress tests measured parameters of mitochondrial function in the NK cells including basal respiration, ATP production, proton leak, maximal respiration, spare respiratory capacity and bioenergetic health index. Glycolytic stress tests measured parameters of glycolytic function such as glycolytic reserve, glycolysis and glycolytic capacity in isolated NK cells from ME/CFS patients and healthy controls using an extracellular flux analyzer, Seahorse XFp.

RESULT: There was a significant reduction of glycolytic reserve in resting NK cells from ME/CFS patients (0.6±0.07 mpH/ min) compared with healthy control (2.25±1.3 mpH/min). Mitochondrial respiration in resting NK cells did not approach statistical significance between ME/CFS patients and healthy controls.

CONCLUSION: These findings suggest resting NK cells from ME/CFS patients have reduced ability to increase glycolytic flux to respond to high energetic demands for ATP production. Hence, the reduced glycolytic reserves we have identified in isolated resting isolated NK cells should be further investigated to assist in understanding ME/CFS pathogenesis.

Study finds reduced ability to respond to energy demands in ME patients’ immune systems

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