Decode ME – world’s biggest genetic study of ME now launched

Posted on 09/13/2022 by wames

#DecodeME study launched

 

On September 12th 2022 the test phase ended and the world’s largest genetic study was launched in the UK.

They are looking for 25,000 DNA samples and even more people to complete the questionnaire.  The study has been expanded to now also include up to 5,000 DNA samples from people who developed ME/CFS after a Covid-19 infection.

You can take part if you meet all the following:

  • You have a diagnosis of ME/CFS from a healthcare professional
  • You are aged 16 or over
  • You live in the UK

Taking part is easy and you can do everything from home

Step 1:  Sign up on the website. It only takes a few minutes.

Step 2: Complete the questionnaire. You can take it slowly and pause at any time and return when you’re ready — today or another day.

Step 3: Spit and post. You may also be asked to provide a DNA sample. In this case, you will be sent a ‘spit kit’ which contains everything you need, and you can return it for free via any postbox. Looking at DNA is the best way to find causes of ME/CFS, and to point the way to treatments.

And when you’ve done that, you’ll have joined the world’s biggest study of ME/CFS.

More information:

Decode ME website

Sign up to take part

Protocol: DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis/chronic fatigue syndrome

Media coverage

BBC: Experts launch world’s largest genetic study of ME

National: University of Edinburgh inviting people living with ME to take part in study

Independent: People with ME invited to take part in major genetic study

Press & Journal: Why 25,000 spit samples could offer hope to Scots with lifelong disease

BBC Radio Bristol: Experts launch world’s largest genetic study of ME

Express: People with Myalgic Encephalomyelitis to take part in world’s largest genetic study

BBC Reporting Scotland: Experts launch world’s largest genetic study of ME

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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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Social Prescribing – Welsh Government consultation

Posted on 08/27/2022 by wames

What is a suitable model for social prescribing in Wales?

 

The Welsh Government want to develop a national framework for social prescribing and is asking Welsh residents to comment.

 

What is social prescribing? 

Connecting people to community based support

The Welsh Government wants to make sure you get the support you need when
you need it.

They tell us there is lots of support available:

  • Clinical support from health services — GPs, nurses, mental health services
    and other healthcare services
  • Well-being support in your local community — activities, groups to join,
    advice, information, and other support.

Most people know how to get clinical support from health services. But they
don’t know as much about getting community-based support through social
prescribing.

Why is social prescribing important?

Find out more

about the Welsh Government’s proposals and consider their questions e.g.:

  • Do you think this model is easy to understand?
  • How can we help people understand social prescribing?
  • How can we help professionals to refer people to a social prescribing service?
  • How can we help people to know about and contact a social prescribing service?
  • How can we help a social prescribing service to target groups who need support?

NB   And how could this help people with ME?

There is much information and more questions to consider, but there is plenty of time. The easy read version of the Consultation documentation is a good place to begin.

Find out more

Consultation ends: 20 October 2022

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IACFSME conference videos & reports 2022

Posted on 08/25/2022 by wames

IACFS/ME’s 15th Medical/ Scientific Conference 27-30 July 2022

 

If you missed out on this large conference organised by the The International Association for CFS/ME (IACFS/ME) you can now watch the video recordings of the lectures or read some of the many written reports.

Online video recordings

 

You can buy a pass to watch all the lectures and workshops, and read the Q&A, slides, handouts etc. for $200 until 30 September 2022 at 11:59 PM EDT (New York City time).  Find out more

 

 

Medscape Conference reports by Miriam Tucker – register to read for free

Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long COVID 

Increasing data link ME/CFS, Long COVID, and Dysautonomia  

Clinicians Can Help People With Severe ME/CFS, Even Unseen

Health Rising Reports, by Cort Johnson:

Systrom’s Keynote Address Kicks off IACFS/ME ME/CFS and Long-COVID Conference

The Hugely Predictive Factor for Long COVID…is also found in ME/CFS and Fibromyalgia: the IACFS/ME Conference II

Myoglobin, Platelets and Monocytes, Oh My: The IACFS/ME Conference Review #III 

Could core issues in ME/CFS be cropping up?

Could a major chronic infection be underlying ME/CFS?

MEA report

Keynote: Pathophysiology of exercise intolerance in ME/CFS & long COVID

Workwell Foundation

Workwell Foundation collaborates on several presentations at the 2022 IACFS/ME meeting

Mecentraal

Exercise intolerance: physical changes in me and long covid

ANZMES

Report by Drs Sarah Dalziel and Rosamund Vallings

Find out more about IACFS/ME

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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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Treatment research: Oxaloacetate treatment for ME/CFS & Long-COVID

Posted on 08/23/2022 by wames

Oxaloacetate Treatment For Mental And Physical Fatigue In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long-COVID fatigue patients: a non-randomized controlled clinical trial

 

Research abstract:

Key points:

  • 6 weeks of treatment led to reduction of fatigue in Long COVID patients by up to 46.8%
  • 6 weeks of treatment led to reduction of fatigue in ME/CFS patients by an average of 22.5% to 33%
  • Uses Chalder Scale to measure fatigue, which is accused of having operational flaws for ME/CFS
  • Compares results to control subjects from a previous study
  • Not possible to buy the supplement at the same dosage researched
  • Researchers say this is worth further study. Others say these results don’t support that.

Background
There is no approved pharmaceutical intervention for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Fatigue in these patients can last for decades. Long COVID may continue to ME/CFS, and currently, it is estimated that up to 20 million Americans have significant symptoms after COVID, and the most common symptom is fatigue.

Anhydrous Enol-Oxaloacetate, (AEO) a nutritional supplement, has been anecdotally reported to relieve physical and mental fatigue and is diminished in ME/CFS patients. Here, we examine the use of higher dosage AEO as a medical food to relieve pathological fatigue.

Methods

ME/CFS and Long-COVID patients were enrolled in an open label dose escalating “Proof of Concept” non-randomized controlled clinical trial with 500 mg AEO capsules. Control was provided by a historical ME/CFS fatigue trial [i.e. not done at the same time] and supporting meta-analysis study, which showed average improvement with oral placebo using the Chalder Scale of 5.9% improvement from baseline.

At baseline, 73.7% of the ME/CFS patients were women, average age was 47 and length of ME/CFS from diagnosis was 8.9 years. The Long-COVID patients were a random group that responded to social media advertising (Face Book) with symptoms for at least 6 months. ME/CFS patients were given separate doses of 500 mg BID (N = 23), 1,000 mg BID (N = 29) and 1000 mg TID (N = 24) AEO for six weeks.

Long COVID patients were given 500 mg AEO BID (N = 22) and 1000 mg AEO (N = 21), again over a six-week period. The main outcome measure was to compare baseline scoring with results at 6 weeks with the Chalder Fatigue Score (Likert Scoring) versus historical placebo. The hypothesis being tested was formulated prior to data collection.

Results

76 ME/CFS patients (73.7% women, median age of 47) showed an average reduction in fatigue at 6 weeks as measured by the “Chalder Fatigue Questionnaire” of 22.5% to 27.9% from baseline (P < 0.005) (Likert scoring). Both physical and mental fatigue were significantly improved over baseline and historical placebo. Fatigue amelioration in ME/CFS patients increased in a dose dependent manner from 21.7% for 500 mg BID to 27.6% for 1000 mg Oxaloacetate BID to 33.3% for 1000 mg TID. Long COVID patients’ fatigue was significantly reduced by up to 46.8% in 6-weeks.

Conclusions

Significant reductions in physical and metal fatigue for ME/CFS and Long-COVID patients were seen after 6 weeks of treatment. As there has been little progress in providing fatigue relief for the millions of ME/CFS and Long COVID patients, anhydrous enol oxaloacetate may bridge this important medical need. Further study of oxaloacetate supplementation for the treatment of ME/CFS and Long COVID is warranted.

Authors & journal:

Alan Cash &  David Lyons Kaufman in Journal of Translational Medicine volume 20, Article number: 295 (2022); publsished 28 June 2022 [doi.org/10.1186/s12967-022-03488-3]

Comments:

S4ME comment: Claims made for efficacy based on the Chalder Fatigue questionnaire were not supported by any significant improvement on the Fatigue Severity Scale, and the data used as the placebo comparator for this 6 week open label trial was from an unrelated trial over 26 weeks.

PR News Wire: New Study: Oxaloacetate Reduces Chronic Fatigue In Just Six Weeks, Promising Data for ME/CFS Patients

Currently, oxaloacetate is available over-the-counter in smaller doses as a nutritional supplement from several national brands. To obtain oxaloacetate at the doses present in this study, patients will need to utilize the medical food Oxaloacetate CFS under the supervision of a licensed healthcare provider.

Current trial (Bateman Horne Center): Medical Food – Anhydrous Enol-Oxaloacetate for Fatigue

Health rising: Oxaloacetate: the Best Mitochondrial Supplement for ME/CFS (and Long COVID?) [2021]

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Research: Impaired TRPM3 ion channel function found in ME/CFS & Long COVID

Posted on 08/20/2022 by wames

TRPM3 dysfunction in post COVID-19 condition and ME/CFS patients

 

Research from the NCNED in Australia, using their Electrophysiology ‘Patch Clamp’ technique, concludes:

The results of this investigation suggest that post COVID-19 condition patients may have impaired TRPM3 ion channel function and provide further evidence regarding the similarities between post COVID-19 condition and ME/CFS.

Impaired TRPM3 channel activity in post COVID-19 condition patients suggest impaired ion mobilisation which may consequently impede cell function resulting in chronic post-infectious symptoms.

Further investigation into TRPM3 function may elucidate the pathomechanism, provide a diagnostic and therapeutic target for post COVID-19 condition patients and commonalities with ME/CFS patients.

 

Research abstract: 

Background:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe multisystemic condition associated with post-infectious onset, impaired natural killer (NK) cell cytotoxicity and impaired ion channel function, namely Transient Receptor Potential Melastatin 3 (TRPM3). Long-term effects of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus has resulted in neurocognitive, immunological, gastrointestinal, and cardiovascular manifestations recently recognised as post coronavirus disease 2019 (COVID-19) condition. The symptomatology of ME/CFS overlaps significantly with post COVID-19; therefore, this research aimed to investigate TRPM3 ion channel function in post COVID-19 condition patients.

Methods:

Whole-cell patch-clamp technique was used to measure TRPM3 ion channel activity in isolated NK cells of N = 5 ME/CFS patients, N = 5 post COVID-19 patients, and N = 5 healthy controls (HC). The TRPM3 agonist, pregnenolone sulfate (PregS) was used to activate TRPM3 function, while ononetin was used as a TRPM3 antagonist.

Results:

As reported in previous research, PregS-induced TRPM3 currents were significantly reduced in ME/CFS patients compared with HC (p = 0.0048). PregS-induced TRPM3 amplitude was significantly reduced in post COVID-19 condition compared with HC (p = 0.0039).

Importantly, no significant difference was reported in ME/CFS patients compared with post COVID-19 condition as PregS-induced TRPM3 currents of post COVID-19 condition patients were similar of ME/CFS patients currents (p > 0.9999). Isolated NK cells from post COVID-19 condition and ME/CFS patients were resistant to ononetin and differed significantly with HC (p < 0.0001).

Conclusion:

The results of this investigation suggest that post COVID-19 condition patients may have impaired TRPM3 ion channel function and provide further evidence regarding the similarities between post COVID-19 condition and ME/CFS. Impaired TRPM3 channel activity in post COVID-19 condition patients suggest impaired ion mobilisation which may consequently impede cell function resulting in chronic post-infectious symptoms. Further investigation into TRPM3 function may elucidate the pathomechanism, provide a diagnostic and therapeutic target for post COVID-19 condition patients and commonalities with ME/CFS patients.

 

Read full paper:

Transient receptor potential melastatin 3 dysfunction in post COVID-19 condition and myalgic encephalomyelitis/chronic fatigue syndrome patients, by Etianne Martini Sasso, Katsuhiko Muraki, Natalie Eaton-Fitch, Peter Smith, Olivia Ly Lesslar, Gary Deed & Sonya Marshall-Gradisnik in Molecular Medicine volume 28, Article number: 98 (2022)

Comment from NCNED: World first chronic fatigue syndrome findings could fast track response to Long COVID

“Our researchers have pioneered a specialised technique known as electrophysiology or ‘patch-clamp’ in immune cells. This technique previously led the team to report on the pathology of ME/CFS and to examine specific ion channels in cells.”

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