Volunteers invited to join WAMES communications team

Posted on 10/17/2022 by wames

Can you help WAMES keep the ME community informed?

 

Are you social media savvy & want pwme to receive the right info at the right time so it makes a real difference to people’s daily lives?

Can you help us research and create content that catches people’s attention, for use in our news blog and social media channels?

Can you make a point simply in an image, or video, for use on Instagram?

Can you help us increase our social media presence and campaigns?

Can you help us maintain our active social media accounts?

WAMES is looking for people to join the Communications team to help us identify, create and share information to the ME community in Wales via our communication platforms:

  • Web news blog
  • Facebook
  • Twitter
  • Instagram
  • E-news

 

Some skills and experience would be useful but a willingness to learn and work as part of a team is most important. There are options to volunteer 2-3 hours per week and also to work on tasks and projects without strict deadlines.

Join us a volunteer or a small steps supporter. Contact Sharon to discuss what is best for you. sharon@wames.org.uk

make a difference for ME in Wales

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Research: Orthostatic Intolerance & neurocognitive impairment overlap in ME/CFS

Posted on 10/13/2022 by wames

Orthostatic Intolerance & neurocognitive impairment overlap in ME/CFS

 

Prof Jason Leonard and US colleagues investigated the relationship between Orthostatic Intolerance and neurocognitive impairment in ME/CFS

Orthostatic intolerance (OI) is the development of symptoms when standing upright that are relieved when reclining (Wikipedia)

Conclusions

Neurocognitive symptoms and OI overlap in ME/CFS, and our results do not support the IOM’s inclusion of neurocognitive impairment and OI as interchangeable symptoms. Furthermore, our findings highlight the need for a uniform method of defining and measuring OI via self-report in order to accurately study OI as a symptom of ME/CFS.

Neurocognitive domains. The DSM-5 defines 6 key domains of cognitive function – Sachdev et al

 

Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), by Caroline L Gaglio, Mohammed F Islam, Joseph Cotler and Leonard A Jason in Epidemiologic Methods October 10, 2022 [doi.org/10.1515/em-2021-0033]

Research abstract

Objectives
The Institute of Medicine (IOM 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington: The National Academies Press) suggested new criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which requires an endorsement of either neurocognitive impairment or orthostatic intolerance (OI) in addition to other core symptoms.

While some research supports the inclusion of OI as a core symptom, others argue that overlap with neurocognitive impairment does not justify the either/or option. The current study assessed methods of operationalizing OI using items from the DePaul Symptom Questionnaire (DSQ-1 and -2) as a part of the IOM criteria. Evaluating the relationship between OI and neurocognitive symptoms may lead to a better understanding of diagnostic criteria for ME/CFS.

Methods
Two-hundred and forty-two participants completed the DSQ. We examined how many participants met the IOM criteria while endorsing different frequencies and severities of various OI symptoms.

Results
Neurocognitive impairment was reported by 93.4% of respondents. OI without concurrent neurocognitive symptoms only allowed for an additional 1.7–4.5% of participants to meet IOM criteria.

Conclusions
Neurocognitive symptoms and OI overlap in ME/CFS, and our results do not support the IOM’s inclusion of neurocognitive impairment and OI as interchangeable symptoms.

Furthermore, our findings highlight the need for a uniform method of defining and measuring OI via self-report in order to accurately study OI as a symptom of ME/CFS.

The full paper is behind a paywall

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Research review: Genetics of COVID-19 & ME/CFS

Posted on 10/11/2022 by wames

Genetics of COVID-19 and ME/CFS: a systematic review

 

Greek researchers found 71 studies for COVID-19 and 26 studies for ME/CFS that looked at genes. They concluded:

Venn diagram regarding the significant genes of COVID-19 and ME/CFS.

“In spite of the fact that COVID-19 and ME/CFS present with some similar symptoms, especially physical and mental fatigue, genetic association, and cohort studies indicate that these two complex diseases share only a few common genes. These… appear to be involved in the regulation of immune processes.

This finding supports the notion that the pathogenesis of both syndromes may derive from some aberrant and lasting immune response, possibly involving mast cells and microglia, which have been recently implicated in both diseases.

Understanding the basis of this immune dysfunction could help with the diagnosis, prognosis, and treatment of these debilitating conditions.

 

Genetics of COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome: a systematic review, by Maria Tziastoudi, Christos Cholevas, Ioannis Stefanidis, Theoharis C Theoharides in Ann Clin Transl Neurol. 2022 Oct 6 [doi: 10.1002/acn3.51631]

Review abstract:

COVID-19 and ME/CFS present with some similar symptoms, especially physical and mental fatigue. In order to understand the basis of these similarities and the possibility of underlying common genetic components, we performed a systematic review of all published genetic association and cohort studies regarding COVID-19 and ME/CFS and extracted the genes along with the genetic variants investigated.

We then performed gene ontology and pathway analysis of those genes that gave significant results in the individual studies to yield functional annotations of the studied genes using protein analysis through evolutionary relationships (PANTHER) VERSION 17.0 software. Finally, we identified the common genetic components of these two conditions.

Seventy-one studies for COVID-19 and 26 studies for ME/CFS were included in the systematic review in which the expression of 97 genes for COVID-19 and 429 genes for ME/CFS were significantly affected. We found that ACE, HLA-A, HLA-C, HLA-DQA1, HLA-DRB1, and TYK2 are the common genes that gave significant results.

The findings of the pathway analysis highlight the contribution of inflammation mediated by chemokine and cytokine signaling pathways, and the T cell activation and Toll receptor signaling pathways. Protein class analysis revealed the contribution of defense/immunity proteins, as well as protein-modifying enzymes. Our results suggest that the pathogenesis of both syndromes could involve some immune dysfunction.

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Research: Fitbit trackers & PROMs help monitor ME/CFS activity

Posted on 09/29/2022 by wames

Activity monitoring and patient-reported outcome measures in ME/CFS patients

A small Norwegian study from the team led by Prof Olav Mella and Dr Oystein Fluge trialled wearable activity trackers and questionnaires to monitor heart rate and activity to aid pacing for people with ME/CFS:

In this study we have observed the course of 27 ME/CFS patients during 6 months’ follow-up without any intervention. It is feasible to use activity trackers for the continuous registration of steps and resting heart rate in a study with ME/CFS patients.

According to feedback from patients, the Fitbit trackers were easy to use, and gave a fair reflection of their physical activity levels…

PROMs – self-report questionnaires which measure the severity or impact of symptoms [MEpedia]

After exploring different combinations of PROMs, activity measures and clinical assessment, we found that the combination of lower SF36-PF and higher DSQ-SF defined patients with more stable symptoms during follow-up in this study with no intervention.

The knowledge from this study could be useful for the design of study protocols and assessments of outcome measures in future interventional studies. We propose including a run-in period with activity tracking and PROMs pre-intervention to evaluate normal fluctuations of the disease in individual patients.

Due to the complexity of symptoms, it is necessary to combine the activity measures with patient-reported outcome measures to assess different aspects of disease.

Research article:

Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome patients, by Ingrid G Rekeland, Kari Sorland, Ove Bruland, Kristin Risa, Kine Alme, Olav Dahl, Karl J Tronstad, Olav Mella, Oystein Fluge in PLoS One Vol 17, #9, Sep 19, 2022

Research abstract:

Introduction

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease with no validated specific and sensitive biomarker, and no standard approved treatment. In this observational study with no intervention, participants used a Fitbit activity tracker. The aims were to explore natural symptom variation, feasibility of continuous activity monitoring, and to compare activity data with patient reported outcome measures (PROMs).

Materials and methods

In this pilot study, 27 patients with mild to severe ME/CFS, of mean age 42.3 years, used the Fitbit Charge 3 continuously for six months.

Patients wore a SenseWear activity bracelet for 7 days at baseline, at 3 and 6 months. At baseline and follow-up they completed the Short Form 36 Health Survey (SF-36) and the DePaul Symptom Questionnaire-Short Form (DSQ-SF).

Results

The mean number of steps per day decreased with increasing ME/CFS severity; mild 5566, moderate 4991 and severe 1998. The day-by-day variation was mean 47% (range 25%-79%). Mean steps per day increased from the first to the second three-month period, 4341 vs 4781 steps, p=0.022.

The maximum differences in outcome measures between 4-week periods (highest vs lowest), were more evident in a group of eight patients with milder disease (baseline SF-36 PF>50 or DSQ-SF<55) as compared to 19 patients with higher symptom burden (SF-36 PF<50 and DSQ-SF>55), for SF-36 PF raw scores: 16.9 vs 3.4 points, and for steps per day: 958 versus 479 steps.

The correlations between steps per day and self-reported SF-36 Physical function, SF-36 Social function, and DSQ-SF were significant. Fitbit recorded significantly higher number of steps than SenseWear. Resting heart rates were stable during six months.

Conclusion

Continuous activity registration with Fitbit Charge 3 trackers is feasible and useful in studies with ME/CFS patients to monitor steps and resting heart rate, in addition to self-reported outcome measures.

 

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Do I need a formal diagnosis of ME/CFS?

Posted on 09/23/2022 by wames

Do you have a diagnosis of ME or CFS from the NHS?

 

For decades many people with suspected ME have not been able to find an NHS professional to confirm their diagnosis. As the NHS has had nothing to offer, people have been forced to seek support and treatments wherever they can.

The launch of the recent Decode ME DNA study into ME has caused some to question if it is time to make another attempt at getting a diagnosis.  The researchers are looking for 20,000 people living in the UK with an ME or CFS diagnosis from a health professional, and 5,000 who developed ME following a COVID infection. Participants may be asked if they agree to provide access to their NHS file for further research.

Health Boards in Wales tell us they have adopted the 2021 NICE ME/CFS guideline so if you have been unable to get a diagnosis in the past, theoretically you should be able to get one now. If you decide to ask your GP to confirm you have ME and they do confirm it, the benefits could include:

  • enables you to take part in research.
  • you are counted by NHS Wales. (NHS Wales records ME using the SNOMED classifiation system which has a category for ME: SCTID: 52702003). New services can be commissioned or extended when statistics show there is a demand.
  • opens up easier access to support services and benefits.

Make sure you are prepared before approaching your GP. Check out the NICE guideline

If you meet resistance from doctors to using the revised NICE guideline, or are refused a diagnosis without cause, please tell us and this information will help WAMES challenge the Health Boards to #ImplementNICEmecfs.

If you have received a diagnosis in the past from a professional outside the NHS or a non-medical NHS professional, such as a therapist, nurse or pharmacist, you might wish to check with your GP whether that has been accepted and included in your medical notes.

The NHS is under great pressure and is struggling to catch up with a backlog, with a reduced quota of staff, so you may feel that getting a diagnosis is not a necessary use of their time. It is worth considering the time that could be saved in the future by having an accurate record of your health status in your records. When you need to consult a new GP, they won’t have to ask the same questions, do the same tests, and should be able to direct you to the most appropriate services straight away.

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Understanding ME (and Long COVID)

Posted on 09/12/2022 by wames

Understanding Myalgic Encephalomyelitis – Myalgic Encephalomyelitis and Long COVID have overlapping presentation

 

Dr Sonya Marshall-Gradisnik and Dr Natalie Eaton-Fitch from Griffith University, on the Gold Coast in Australia, say there is a significant overlap in symptoms and possibly the underlying processes in ME and LC. Lessons should be learned from understanding ME:

An important research challenge is the lack of a validated biomarker, laboratory-based test, and animal model, likely attributed to inconsistency in protocols, such as cell isolation, sample type, and technique. These challenges provide important lessons for research of Long Covid.

By developing interdisciplinary and consistent research protocols, the pathomechanism of ME/CFS and Long Covid can be elucidated. The recent interest in the overlap that exists between ME/CFS and Long Covid poses several questions, such as whether Long Covid predisposes a person to ME/CFS, and whether an individual has Long Covid or ME/CFS.

Pathomechanism – the process by which a disease or illness occurs. [Wiki]

Research into the etiology of ME/CFS and Long Covid should simultaneously identify the mechanism and diagnostic approach to both. ME/CFS poses a substantial health concern and has recently been taken more seriously since the emergence of Long Covid, and renewed focus on diagnostic, research, and treatment practices is needed.

Proposed mechanisms underlying ME/CFS

Proposed mechanisms underlying ME/CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presents as a range of symptoms that affect multiple organ systems. Enteric dysbiosis, neurological and immune dysfunction, as well as impaired mitochondrial function are implicated in the pathomechanism of ME/CFS. These symptoms also occur in Long Covid, although with differing prevalence.

Read more about the nature of ME/CFS:

Understanding myalgic encephalomyelitis – Myalgic encephalomyelitis and Long Covid have overlapping presentation, by Sonya Marshall-Gradisnik and Natalie Eaton-Fitch in Science Vol 377, Issue 6611 pp. 1150-1151, 8 Sep 2022 [DOI: 10.1126/science.abo1261]

The authors:

Professor Sonya Marshall-Gradisnik   Dr Natalie Eaton-Fitch    more research

Comments:

Medscape: Post-COVID Fatigue, Exercise Intolerance Signal ME/CFS

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Respect and include unpaid carers for people with ME/CFS

Posted on 09/08/2022 by wames

Prioritising unpaid carers in new approaches to ME/CFS

 

Dr Siobhan O’Dwyer, a Senior Lecturer in Ageing and Family Care at the University of Exeter Medical School, consulted carers of people with ME/CFS and concluded they had a key role in patient care, which was not fully recognised or supported.  She has made a number of policy recommendations.

 

Policy Recommendations

The recent change in attitudes to ME/CFS is a welcome one, but it may still be decades before biomedical breakthroughs are made or translated into effective, widely available treatments. In the meantime, family carers will continue to provide the majority of care and support for people with ME/CFS, at great cost to their own wellbeing. There is an urgent need to ensure that – in research, policy, and health and social care – carers’ needs, experiences, and expertise are being fully recognised and appropriately addressed.

While the new NICE Guideline and the APPG report go some way to encouraging greater respect for and inclusion of carers, they do not go far enough. They provide little in the way of practical guidance for health and social care professionals seeking to work in genuine partnership with carers. They also suggest referring carers to generic information and support, a strategy that will do little to address the unique needs (or historic mistreatment) of ME/CFS carers and that has, in an under-resourced system, been of little benefit to carers more generally.

Consequently, there is an urgent need to:

  • Acknowledge the significant harm that has been done to carers by a health and social care system that has misunderstood and mistreated people with ME/CFS.
  • Ensure carers’ voices are included in all policy making about ME/CFS.
  • Recognise carers as experts by experience and vital advocates, particularly for those with severe ME/CFS who may be unable to advocate for themselves.
  • Ensure health and social care professionals are equipped with the skills and resources to engage in positive working relationships with carers.
  • Ensure that the wellbeing of ME/CFS carers is a priority in health and social care provision.
  • Ensure that the wellbeing of carers is a priority for ME/CFS research.

Read the full report

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Research: Long COVID, ME/CFS & symptom severity in Germany

Posted on 08/31/2022 by wames

Post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity

 

German researchers compared ME/CFS and long COVID patients and found even mild C-19 can lead to PEM. Almost half of the LC patients met the criteria for ME/CFS. The other half had a similar but less severe reaction to exertion, but the physiological changes in LC and ME/CFS immune system functioning were found to be different.

A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity, by C Kedor, H Freitag, L Meyer-Arndt, K Wittke, LG Hanitsch, T Zoller, F Steinbeis, M Haffke, G. Rudolf, B Heidecker, T Bobbert, J Spranger, HD Volk, C Skurk, F Konietschke,
F Paul, U Behrends, J Bellmann-Strobl & C Scheibenbogen , in Nature Communications vol 13, no. 5104 (2022), 30 August 2022

Research abstract:

A subset of patients has long-lasting symptoms after mild to moderate Coronavirus disease 2019 (COVID-19). In a prospective observational cohort study, we analyze clinical and laboratory parameters in 42 post-COVID-19 syndrome patients (29 female/13 male, median age 36.5 years) with persistent moderate to severe fatigue and exertion intolerance six months following COVID-19. Further we evaluate an age- and sex-matched postinfectious non-COVID-19 myalgic encephalomyelitis/chronic fatigue syndrome cohort comparatively.

Most post-COVID-19 syndrome patients are moderately to severely impaired in daily live. 19 post-COVID-19 syndrome patients fulfill the 2003 Canadian Consensus Criteria for myalgic encephalomyelitis/chronic fatigue syndrome.

Disease severity and symptom burden is similar in post-COVID-19 syndrome/ myalgic encephalomyelitis/ chronic fatigue syndrome and non-COVID-19/ myalgic encephalomyelitis/ chronic fatigue syndrome patients.

Hand grip strength is diminished in most patients compared to normal values in healthy. Association of hand grip strength with hemoglobin, interleukin 8 and C-reactive protein in post-COVID-19 syndrome/non-myalgic encephalomyelitis/chronic fatigue syndrome and with hemoglobin, N-terminal prohormone of brain natriuretic peptide, bilirubin, and ferritin in post-COVID-19 syndrome/myalgic encephalomyelitis/chronic fatigue syndrome may indicate low level inflammation and hypoperfusion as potential pathomechanisms.

Comment:

Laboratory Equipment: Scientists link mild COVID-19 to CFS

Newswise: SARS Cov-2 can trigger Chronic Fatigue Syndrome

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Research: Endothelial cell function in Post-COVID-19 patients, with & without ME/CFS

Posted on 08/27/2022 by wames

Serum of Post-COVID-19 Syndrome patients with or without ME/CFS differentially affects endothelial cell function in vitro

 

The endothelium is a thin membrane that lines the inside of the heart and blood vessels. Endothelial cells release substances that control vascular relaxation and contraction as well as enzymes that control blood clotting, immune function and platelet (a colorless substance in the blood) adhesion. [Cedars Sinai]

Key points:

  • the study was done in vitro i.e. outside the body, often in a test tube
  • 3 groups of patients’ blood serum was studied
  • both similarities and differences were found in the 2 groups of Post COVID patients (with and without ME/CFS)
  • anti-endothelial cell autoantibodies (AECAs) binding to Endothelial cells was significantly increased in Post COVID patients with ME/CFS.
  • both differed from healthy controls

Research abstract

Recently, endothelial dysfunction (ED) has been demonstrated in these patients, but the mechanisms remain elusive.

Therefore, we investigated the effects of patients’ sera on endothelia cells (ECs) in vitro. PCS (n = 17), PCS/CFS (n = 13), and healthy controls (HC, n = 14) were screened for serum anti-endothelial cell autoantibodies (AECAs) and dysregulated cytokines.

Serum-treated ECs were analysed for the induction of activation markers and the release of small molecules by flow cytometry. Moreover, the angiogenic potential of sera was measured in a tube formation assay.

While only marginal differences between patient groups were observed for serum cytokines, AECA binding to ECs was significantly increased in PCS/CFS patients.

Surprisingly, PCS and PCS/CFS sera reduced surface levels of several EC activation markers. PCS sera enhanced the release of molecules associated with vascular remodelling and significantly promoted angiogenesis in vitro compared to the PCS/CFS and HC groups.

Angiogenesis – The formation and development of new blood vessels [Wiktionary]

Additionally, sera from both patient cohorts induced the release of molecules involved in inhibition of nitric oxide-mediated endothelial relaxation.

Overall, PCS and PCS/CFS patients′ sera differed in their AECA content and their functional effects on ECs, i.e., secretion profiles and angiogenic potential. We hypothesise a pro-angiogenic effect of PCS sera as a compensatory mechanism to ED which is absent in PCS/CFS patients.

Excerpt from paper:

Based on our observations we speculate on serum factors playing a role in compensatory responses to ED and hypoperfusion in PCS, but not or insufficiently in PCS/CFS patients. Our results may thus provide a new perspective on ME/CFS chronicity which should be further examined.

Authors: Lavinia Flaskamp;  Constanze Roubal; Steven Uddin; Franziska Sotzny; Claudia Kedor; Sandra Bauer; Carmen Scheibenbogen; Martina Seifert

Publication: Cells. 2022; 11(15):2376 [doi.org/10.3390/cells11152376] 2 August

Dr Katrina Pears comments 

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#WAMES_800 Fundraising Journey – 2nd £100 target reached!

Posted on 08/25/2022 by wames

#WAMES_800 Fundraising Journey climbs another step towards our goal

 

Slowly but surely we have taken another step towards reaching our target of £800 to fund next year’s WAMES activities.

The £200 milestone has been reached, only £600 to go!

Every little helps

The second milestone has been reached by the sale of hand made cards and an increase in donations from online shopping. Each shop might raise anything from 25p for a weekly supermarket shop to £5+ a time on a big purchase, but it all adds up. Many thanks to all who have joined us on our fundraising journey. Why not invite others to join us!

 

Find out more about our Fundraising Journey:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 – How can I donate?

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