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ME Awareness – Wear blue for awareness week 2017
ME Awareness week 8-14 May 2017
This is the week we tell people about ME. Wearing blue to match our blue ribbons is one of the ways we can attract attention and invite conversations about the debilitating illness that affects an estimated 13,000 people in Wales.
Blue ideas for when you travel out into the local community or onto social networks:
blue hair blue clothes
blue nails blue make-up
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Vitamin and mineral status in CFS & FM
Review abstract:
Vitamin and mineral status in chronic fatigue syndrome and fibromyalgia syndrome: a systematic review and meta-analysis, by Monica L Joustra, Isidor Minovic, Karin A M Janssens, Stephan JL Bakker, Judith GM Rosmalen in PLoS ONE 12(4): e0176631 [Published: April 28, 2017]
BACKGROUND
Many chronic fatigue syndrome (CFS) and fibromyalgia syndrome (FMS) patients (35–68%) use nutritional supplements, while it is unclear whether deficiencies in vitamins and minerals contribute to symptoms in these patients. Objectives were (1) to determine vitamin and mineral status in CFS and FMS patients as compared to healthy controls; (2) to investigate the association between vitamin and mineral status and clinical parameters, including symptom severity and quality of life; and (3) to determine the effect of supplementation on clinical parameters.
METHODS
The databases PubMed, EMBASE, Web of Knowledge, and PsycINFO were searched for eligible studies. Articles published from January 1st 1994 for CFS patients and 1990 for FMS patients till March 1st 2017 were included. Articles were included if the status of one or more vitamins or minerals were reported, or an intervention concerning vitamins or minerals was performed. Two reviewers independently extracted data and assessed the risk of bias.
RESULTS
A total of 5 RCTs and 40 observational studies were included in the qualitative synthesis, of which 27 studies were included in the meta-analyses. Circulating concentrations of vitamin E were lower in patients compared to controls (pooled standardized mean difference (SMD): -1.57, 95%CI: -3.09, -0.05; p = .042). However, this difference was not present when restricting the analyses to the subgroup of studies with high quality scores.
Poor study quality and a substantial heterogeneity in most studies was found. No vitamins or minerals have been repeatedly or consistently linked to clinical parameters. In addition, RCTs testing supplements containing these vitamins and/or minerals did not result in clinical improvements.
DISCUSSION
Little evidence was found to support the hypothesis that vitamin and mineral deficiencies play a role in the pathophysiology of CFS and FMS, and that the use of supplements is effective in these patients.
REGISTRATION
Study methods were documented in an international prospective register of systematic reviews (PROSPERO) protocol, registration number: http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42015032528
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Tagged minerals, Monica L Joustra, vitamins
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ME Awareness – Light the sky blue!
ME Awareness – light the sky blue on International ME Awareness day 12th May 2017
In recent years a number of public buildings in towns and cities, which are always lit up at night, have switched to blue lights to mark ME Awareness day. This makes a great statement. Do you know a building that could go blue on May 12th this year? Ask them.
Why not use those blue Christmas LED lights to decorate a window, tree or bush outside your house and ask your neighbours to join in.
Ask your local newspaper to run a story on why you are lighting up and/or wearing blue this year.
Blue balloons tied to the gatepost could make a blue statement during the day.
The role of cytokine IP-10 in CFS
Research Abstract:
The role of IP-10 in Chronic Fatigue Syndrome, by Anne McArdle, Arief Gusnanto, Kate Ear, George Sakellariou, Clare Lawton, Daniel Owens, Graeme Close, Michael Beadsworth, Louise Dye in FASEB Journal Vol. 31:1 Supplement, lb789 April 2017
Chronic fatigue syndrome (CFS) is a severely debilitating and complex illness of uncertain cause, characterised by prolonged, fatigue triggered by minimal activity. There is evidence that CFS is associated with chronic inflammation. Studies have shown that plasma levels of cytokines are chronically modified in patients with CFS.
This study examined physiological, subjective and cognitive factors associated with plasma cytokine concentrations in a cohort of 92 patients compared with age and sex matched healthy controls. A sub-group of patients and healthy controls (HCs) also underwent more detailed analyses of muscle function, cytokine production and cognitive function.
Patients were diagnosed with CFS if they met the Oxford criteria for Chronic Fatigue Syndrome and recommended NICE guidelines. Patients completed a number of validated questionnaires including the Chalder Fatigue Questionnaire (CFQ) which is considered a valid and reliable measure of fatigue in patients with CFS.
Patients with CFS demonstrated a characteristic significant reduction in Maximal Voluntary Contraction Force compared with HCs. Data on plasma concentrations of 27 pro- and anti-inflammatory cytokines were analysed using multiple or logistic regression with age and sex which were significant covariates included in each model.
CFS was strongly associated with a limited number of cytokines. Diagnosis of CFS was associated with increased plasma contents of MIP-1a, MIP-1b and RANTES (p<0.05) and marginally with Eotaxin (p=0.07) when modelled individually. MVC and self-reported fatigue both showed particularly strong associations with plasma IP-10 concentrations. Muscle content of IP-10 mRNA was significantly elevated, suggesting that, at least in part, muscle was a source of this IP-10 but not the other cytokines.
Pairwise associations between MVC and cytokines demonstrated that the reduced MVC seen in patients with CFS was strongly associated with plasma levels of IP-10, TNF-alpha and IL-5. Further analyses revealed strong correlations between plasma RANTES and eotaxin levels and poorer verbal recall and RTs of patients with CFS. The consistent association of IP-10 with the physiological features and of RANTES and eotaxin with the cognitive features of CFS provides compelling evidence for a role of these cytokine/ chemokines in the physiological and cognitive pathology of CFS.
This work was funded by the Medical Research Council.
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ME awareness – wear, post or tweet a blue ribbon
Wear a blue ribbon on May 12th, International ME Awareness Day, whenever you go out, post or tweet
The charity BRAME (Blue Ribbon Awareness for ME) sells blue ribbons as a triple symbol of hope for all those affected by ME/CFS:
It is creating awareness of ME/CFS
It is helping to raise funds for research
It is showing support for those affected by ME/CFS
- 5p per ribbon plus 50p P&P on orders up to £5
- £1.50 per BRAME enamel badge plus 50p P&P on orders up to £5
- Order from: BRAME
30 Winmer Avenue, Winterton-on-Sea, Great Yarmouth, Norfolk,
NR29 4BA Tel/Fax: 01493 393717 info@brame.org
Download a WAMES twibbon to add to your twitter or FB page and show your support for ME in Wales
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PLOSone journal ‘expression of concern’ about PACE authors’ unwillingness to share data
Expression of Concern: Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis, by the PLOS ONE Editors in PLoS ONE 12(5)e0177037 [Published: May 2, 2017]
Several readers have raised concerns about some of the analyses reported in the article and made requests for the data underlying this study.
The PLOS ONE policy governing the sharing of data that applies to articles submitted before March 3, 2014, requires that authors agree to make freely available any materials and data described in their publication that may be reasonably requested for the purpose of academic, non-commercial research (http://journals.plos.org/plosone/s/file?id=c4aa/PLOSONE_data_policy_before_2014March.pdf).
We assessed the concerns raised and the requests for data and we sought advice from two editorial board members. The advice we received was that the individual-level patient data for Tables 1,2,3,4 and 5 are necessary to replicate the cost-effectiveness analyses reported in the article. In line with the advice received, we contacted the authors to request the individual-level patient data for these tables.
The authors raised concerns related to patient confidentiality and specifications under the consent sought from participants at the time of recruitment for the trial.
In consideration of the requirements for ethical oversight of data access that may apply to datasets involving human subjects, we contacted the authors and Queen Mary University of London, where the dataset is held, to request that steps be taken to develop a mechanism that would allow requests for data to be independently reviewed and the data released in accordance with our policy while respecting patient privacy. The authors and Queen Mary University of London shared the data policy in place at the institution, however we consider that aspects of the existing framework impose limitations and conditions not aligned with our editorial policy.
The authors have offered to release aggregated data from the study but have reiterated reservations about the public release of individual-level patient data. The journal policy does not require public release of anonymised patient-level data, but does require a suitable framework for data access for the purpose of academic, non-commercial research. While the release of summarized data does not fully comply with the journal requirements, we welcome that the authors are now willing to share summarized data, and we will provide this once it is made available to us.
In spite of requests to the authors and Queen Mary University of London, we have not yet received confirmation that an institutional process compatible with the existing PLOS data policy at the time has been developed or implemented for the independent evaluation of requests for data from this study. We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article.
Statement from the authors
We disagree with the Expression of Concern about our health economic paper that PLOS ONE has issued and do not accept that it is justified.
We believe that data should be made available and have shared data from the PACE trial with other researchers previously, in line with our data sharing policy. This is consistent with the data sharing policies of Queen Mary University of London, and the Medical Research Council, which funded the trial. The policy allows for the sharing of data with other researchers, so long as safeguards are agreed regarding confidentiality of the data and consent as specified by the Research Ethics Committee (REC). We have also pointed out to PLOS ONE that our policy includes an independent appeal process, if a request is declined, so this policy is consistent with the journal’s policy when the paper was published.
During negotiations with the journal over these matters, we have sought further guidance from the PACE trial REC. They have advised that public release, even of anonymised data, is not appropriate. As a consequence, we are unable to publish the individual patient data requested by the journal. However, we have offered to provide key summarised data, sufficient to provide an independent re-analysis of our main findings, so long as it is consistent with the REC decision, on the PLOS ONE website. As such we are surprised by and question the decision by the journal to issue this Expression of Concern.
Reference
1. McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, et al. (2012) Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis. PLoS ONE 7(8): e40808.
More information about editorial policy:
PLOS one blog post,by Iratxe Puebla and Joerg Heber, 2 May 2017: Data sharing in clinical research: challenges and open opportunities
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Differences in ME & CFS symptomology in patients with normal and abnormal exercise test results
Differences in ME and CFS symptomology in patients with normal and abnormal exercise test results, by Stephanie L McManimen and Leonard A Jason in International Journal of Neurology and Neurotherapy 2017, vol 4 issue 1, 4:066 [Published: March 21, 2017]
Research abstract:
Post-exertional malaise (PEM) is a cardinal symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), which often distinguishes patients with this illness from healthy controls or individuals with exclusionary illnesses such as depression. However, occurrence rates for PEM fluctuate from subject to how the symptom is operationalized. One commonly utilized method is exercise testing, maximal or submaximal. Many patients with ME and CFS experience PEM after participating in these tests, and often show abnormal results.
However, some patients still exhibit normal results after participating in the exercise testing. This study examined the differences between two patient groups with ME and CFS, those with normal results and those with abnormal results, on several PEM-related symptoms and illness characteristics. The results suggest those that displayed abnormal results following testing have more frequent and severe PEM, worse overall functioning, and are more likely to be bedbound than those that displayed normal results.
Excerpt from research article:
These findings suggest there is a subgroup of patients with ME and CFS that is more functionally impaired than the rest of the patient population. Although both groups of
participants endorsed PEM-related symptoms, the group with the abnormal results displayed higher frequency and severity for the symptoms. Since this group appears to
be more impaired, they may have a lower threshold for exertion, which could result in them experiencing PEM more quickly than the group with normal test results.
Conversely, the group with normal test results may require more exertion before the results would differ from those of healthy controls as they are not as functionally impaired
as the group with abnormal test results.
This finding result in a heterogeneous patient population for research involving exercise testing, which may help explain the discrepant results found in previous studies.
Additionally, since the group with abnormal exercise test results is more likely to be bedbound or housebound, it is possible that they are unable to make it to a tertiary
clinic to participate in these research studies. As a result, the more severely impaired group patients with ME and CFS may be excluded from analyses comparing the full patient population to healthy control populations. This could prevent researchers from finding significant differences between patients and controls if the more impaired patients
are unable to participate in research.
This study has several limitations. First, this study used an international convenience sample. All participants had a self-reported, current diagnosis of ME or CFS so there was no standardized diagnostic criteria necessary to participate in this study. The study also included participants from many settings and countries. Previous research has shown differences in patient populations between US and UK samples.
However, this may actually be seen as an advantage as it would allow for us to generalize the results across various settings (i.e. tertiary care, community, and primary care samples) and geographic locations.
Additionally, we do not have information on the types of tests that were performed, submaximal or maximal. The participants self-reported that they had previously
received normal or abnormal exercise test results. Future research should examine the functional and symptomatic differences between the patients with normal and abnormal
results in a controlled, standardized study to form a more homogenous patient sample.
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Tagged exercise tests, PEM, Post-exertional malaise, Prof Leonard Jason, Stephanie L McManimen, symptomatology
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WAMES supports proposal to continue classifying ME as neurological
WAMES supports proposal to classify ME as neurological
WAMES has submitted our comment on a proposal for the revision of the World Health Organisation’s International Classification of Diseases (ICD):
The Welsh Association of ME & CFS Support (WAMES) supports the proposal for the ICD-11 revision submitted by Chapman and Dimmock on 27th March 2017.
WAMES agrees that Myalgic encephalomyelitis (ME) and Postviral fatigue syndrome should continue to be classified at G93.3 in the chapter on Diseases of the nervous system. Although research has found dysfunction in a number of the body’s systems (e.g. neurological, immune, endocrine, autonomic) there is significant Central Nervous System involvement and unless research provides a clearer and different picture of the aetiology of the condition, it should not be moved. In addition, the symptoms often present in a similar way to other neurological conditions (e.g. MS) so it fits naturally in this category.
We agree that the term “Chronic Fatigue Syndrome” and “Myalgic encephalomyelitis” should be the concept titles, with separate codes, as the terms are not always used to mean the same thing and are likely to be increasingly identified with different subgroups of illness. We agree that “Postviral fatigue syndrome” should be removed as a lead term because not all cases are postviral. We also agree that the ICD-10 term “benign myalgic encephalomyelitis” should be modified to “myalgic encephalomyelitis” as the condition is not benign. It is complex and leads to considerable debility.
WAMES believes it is important that ICD-11 should not contribute to the current confusion amongst many health professionals between, on the one hand Myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and on the other hand idiopathic chronic fatigue, bodily distress disorder (BDD) / medically unexplained symptoms (MUS) etc. Exclusions for ME and CFS should be noted in the revised section on somatoform disorders in the Mental health section of ICD-11.
- 549 individuals or organisations have agreed with the proposal
- over 380 comments have been submitted
- 53 organisations from around the world have responded
More information: dx revision watch – monitoring the development of ICD-11 and DSM-5 #patientsneedprotection support proposal for ICD-11
Twitter @dxrevisionwatch
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ME Awareness – Missing years
Missing years – ME/CFS Awareness
These squares have been lovingly crafted in a bid to raise awareness of the little understood but devastating diseases known as ME (Myalgic), Chronic Fatigue Syndrome and Fibromyalgia. They show the number of years that sufferers have lost to these illnesses and will be featured on the Missing years Facebook page throughout May.
Many contributors are too unwell to leave their homes (and sometimes their beds) very often, too ill to work or take part… in sporting or social activities. They range in age between 17 and 69 years old and live mostly in the UK, the USA and Australia.
The total number of years lost to illness by the 55 people who participated, depicted in the squares, is 1109. On average that is 20 years and 2 months per person.
This is even more shocking when you consider that some people have only included the more severely affected years when life as they once knew it changed completely, ignoring those times when they were experiencing symptoms but still able to push on regardless. The squares depict lengths of illness ranging from 4 to 45 years, though one participant has been ill for all of her 69 years: she couldn’t bear to put such a high number.
Making the Squares
A few of the techniques used to make the squares include: paper cutting, digital portraiture, marbling, collage, ink and wax, coloured pencils, chalk, pre-loved birthday cards, buttons, flowers, photography, knitting, crochet, sewing, cross stitch, origami and a pretend concrete block.
Some people required help from more able participants to make their square. Out of the hundred people who intended to make a square, only about 40 managed to complete one even with the offer of help. Several people noted how difficult it was to complete the square physically even over a period of months, and many found it emotionally challenging.
We have found it moving looking at other people’s squares, we hope you will too.
