World ME Alliance asks WHO to recognise ME

Posted on 10/19/2022 by wames

World ME Alliance calls on WHO Director General to recognise ME alongside Long Covid

 

On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastation that Long Covid is causing around the world and sets out five key elements of a plan to drive change.

It is vital that the impact of Long Covid is recognised at the highest levels, and the World ME Alliance congratulates Dr Ghebreyesus on this stance.

[Image by Emerge Australia]

However, as more research is undertaken, it is becoming clearer that a large proportion of those with Long Covid now meet the criteria for an ME/CFS diagnosis. The WHO must recognise this as efforts to find treatments and a cure continue.

The World ME Alliance has written to Dr Ghebreyesus calling on him to meet with representatives.

Dr Ghebreyesus has previously committed to reaching out to ME experts, and we hope that through collaborative efforts we can learn from ME and ensure that progress for people with Long Covid doesn’t leave the millions already suffering with ME behind.

Read the full letter from the World ME Alliance and its 19 members, which includes WAMES, representing Wales.

 

Dear Dr Ghebreyesus,

Our World ME Alliance read your recent Guardian article “The data is clear: long Covid is devastating people’s lives and livelihoods” with great interest.

We would like to congratulate you and the World Health Organization for taking this issue so seriously. In particular, we appreciate your acknowledgement of the devastation Long Covid is causing, the need to listen to patient groups, and the need for sustained investment to expand our scientific understanding so better treatments and clinical management can be developed.

While we congratulate the efforts to innovate around Long Covid, we also see that people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), many of whom have already suffered decades of the same devastation you have described, face a lack of recognition and global response.

The most prevalent Long Covid symptoms — crippling fatigue, post-exertional malaise, widespread inflammation, and cognitive dysfunction — mirror those of ME/CFS. As more research is undertaken, it is becoming clearer that a large proportion of those with Long Covid now meet the criteria for an ME/CFS diagnosis, also known to be a viral-associated disease.

Additionally, many studies1, 2, 3, 4, 5 are making key scientific connections between ME/CFS and Long Covid.

This is not new. Outbreaks of viruses such as swine flu (H1N1) and Ebola, as well as common viruses including Epstein-Barr Virus (EBV), demonstrate that chronic illness triggered by viral infections, including ME/CFS, are a recurrent phenomenon.

We would welcome a meeting with you to follow up on past commitments to establish contact with ME/CFS experts and patient organisations. We believe this could fast track support for people with ME/CFS and also those with Long Covid, ensuring learnings from ME/CFS are taken advantage of, and that progress for people with Long Covid doesn’t leave those with ME/CFS behind.

Yours sincerely,
Sonya Chowdury, Co-Chair of the World ME Alliance, CEO of Action for M.E.

Oved Amitay, Co-Chair of the World ME Alliance, President and CEO of Solve M.E.

Sian Leary, Head of Advocacy and Communications, World ME Alliance

  • #MEAction
  • 12ME
  • ACAF – Associació Catalana d’Afectades i Afectats de Fibromiàlgia i d’altres Síndromes
    de Sensibilització Central
  • Action for M.E.
  • AMMES – The American ME and CFS Society
  • ANZMES – The Associated New Zealand Myalgic Encephalomyelitis Society
  • AQEM
  • CFS/ME Associazione Italiana
  • European ME Coalition
  • Forward M.E.
  • Hope 4 ME & Fibro Northern Ireland
  • ME Support IOM
  • ME/CVS Stichting Nederland
  • Millions Missing Canada
  • Millions Missing Belgique
  • Plataforma Familiars FM-SFC-SQM Síndromes de Sensibilització Central
  • Solve M.E.
  • The ME CFS Foundation South Africa
  • WAMES – Welsh Association of ME & CFS Support

Endnotes

1. Davis, Hannah E., Gina S. Assaf, Lisa McCorkell, Hannah Wei, Ryan J. Low, Yochai Re’em, Signe Redfield, Jared P. Austin, and Athena Akrami. “Characterizing long COVID in an international cohort: 7 months of symptoms and their impact.” EClinicalMedicine 38 (2021): 101019. https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext

“Found the most frequent symptoms after month 6 were fatigue, post-exertional malaise, and cognitive dysfunction. Symptoms varied in their prevalence over time, and we identified three symptom clusters, each with a characteristic temporal profile.”

2. Mancini, Donna M., Danielle L. Brunjes, Anuradha Lala, Maria Giovanna Trivieri, Johanna P. Contreras, and Benjamin H. Natelson. “Use of cardiopulmonary stress testing for patients with unexplained dyspnea post–coronavirus disease.” Heart Failure 9, no. 12 (2021): 927-937. https://pubmed.ncbi.nlm.nih.gov/34857177/

“This is the first report to indicate a high rate of patients with PASC meeting criteria for ME/CFS (46%), which is consistent with what was found after the SARS COVID-1 outbreak.”


3. Wong, Timothy L., and Danielle J. Weitzer. “Long COVID and myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) —a systemic review and comparison of clinical presentation and symptomatology.” Medicina 57, no. 5 (2021): 418. https://www.mdpi.com/1648-9144/57/5/418/htm

“All three major criteria symptoms as specified by most ME/CFS case definitions… were reported by multiple selected long COVID studies, with fatigue being the most reported symptom…. All sub-categories within the minor criteria of ME/CFS… were matched with long-COVID studies.”

4. Paul, Bindu D., Marian D. Lemle, Anthony L. Komaroff, and Solomon H. Snyder. “Redox imbalance links COVID-19 and myalgic encephalomyelitis/ chronic fatigue syndrome.” Proceedings of the National Academy of Sciences 118, no. 34 (2021): e2024358118. https://www.pnas.org/doi/10.1073/pnas.2024358118

“People with acute COVID-19 and people with ME/CFS share redox imbalance, systemic inflammation and neuroinflammation, impaired production of ATP and other abnormalities in common, abnormalities that have bidirectional connections.”

5. Klein, Jon, Jamie Wood, Jillian Jaycox, Peiwen Lu, Rahul M. Dhodapkar, Jeffrey R. Gehlhausen, Alexandra Tabachnikova et al. “Distinguishing features of Long COVID identified through immune profiling.” medRxiv (2022).
https://www.medrxiv.org/content/10.1101/2022.08.09.22278592v1

“Analysis of circulating immune mediators and various hormones also revealed pronounced differences, with levels of cortisol being uniformly lower among participants with Long COVID relative to matched control groups. Integration of immune phenotyping data into unbiased machine learning models identified significant distinguishing features critical in accurate classification of Long COVID, with decreased levels of cortisol being the most significant individual predictor.”

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Research: DNA changes during a relapse and recovery cycle in ME/CFS

Posted on 10/17/2022 by wames

Dynamic epigenetic changes during a relapse and recovery cycle in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

 

Epigenetics is the study of how your behaviors and environment can cause changes that affect the way your genes work. Unlike genetic changes, epigenetic changes are reversible and do not change your DNA sequence, but they can change how your body reads a DNA sequence. (CDC)

A New Zealand research team led by Prof Warren Tate explored changes in the genes of 2 patients with ME/CFS during a relapse which resulted in “functionally important changes in their DNA methylomes that, while differing between the two patients, led to very similar compromised physiology.

 

Conclusions
This study shows the benefits of precision medicine for individual patients with a disease as physiologically complex as ME/CFS.

Precision medicine – an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. (NLH)

Currently, ME/CFS patients can respond quite differently to specific medications, for example supplements like vitamin B12, and to anti-inflammatory drugs like naltrexone, and to physiological states like pregnancy, with some showing marked improvement, some marked deterioration, and some seemingly no change in their condition.

By considering individual patients over the course of their ME/CFS disease we can better understand not only the similarities within the overall patient group, but also develop an in depth understanding of the fluctuations for each patient that relates to their specific pathophysiology.

Variable methylation of regulatory regions associated with the relapse condition has in this study identified a number of genes with key functional roles in immune, inflammatory, metabolic and mitochondrial pathways.

For a disease that has proven challenging to diagnose and characterise, with the delay in diagnosis detrimental for the affected person, this kind of analysis provides not only further evidence of serious biological dysfunction, but importantly also ongoing systematic molecular changes that inform future targets for individual treatment or symptom management as we continue to unravel and understand the complex nature of ME/CFS.

Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Amber M Helliwell, Peter A Stockwell, Christina D Edgar, Aniruddha Chatterjee, Warren P Tate in Int J Mol Sci. 2022 Oct 6;23(19):11852 [doi: 10.3390/ijms231911852]

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease with variable severity. Patients experience frequent relapses where symptoms increase in severity, leaving them with a marked reduction in quality of life.

Previous work has investigated molecular differences between ME/CFS patients and healthy controls, but not the dynamic changes specific to each individual patient. We applied precision medicine here to map genomic changes in two selected ME/CFS patients through a period that contained a relapse recovery cycle.

Method

DNA was isolated from two patients and a healthy age/gender matched control at regular intervals and captured the patient relapse in each case. Reduced representation DNA methylation sequencing profiles were obtained spanning the relapse recovery cycle. Both patients showed a significantly larger methylome variability (10-20-fold) through the period of sampling compared with the control.

Results

During the relapse, changes in the methylome profiles of the two patients were detected in regulatory-active regions of the genome that were associated, respectively, with 157 and 127 downstream genes, indicating disturbed metabolic, immune and inflammatory functions.

Severe health relapses in the ME/CFS patients resulted in functionally important changes in their DNA methylomes that, while differing between the two patients, led to very similar compromised physiology.

DNA methylation as a signature of disease variability in ongoing ME/CFS may have practical applications for strategies to decrease relapse frequency.

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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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ME/CFS Genetics Symposium 2022: Videos & reports

Posted on 10/06/2022 by wames

ME/CFS Genetics Research Symposium 2022

 

Action for ME and the University of Edinburgh Human Genetics Unit joined forces to run an ME Genetics Research Symposium on 14 September 2022 in Edinburgh ahead of the launch of the Decode ME study.

The symposium brought together researchers interested in ME, people with ME, carers and potential funders to drive collaboration in this field and develop a 10-year programme of ME/CFS genetics research.

Videos:

Prof Chris Ponting

Chris Ponting: The Centre of Excellence vision

Marte Viken, Researcher, Oslo University Hospital: “An immunogenetic study of ME/CFS patients”

Steve Gardner, Precision Life: ‘Genetic Risk Factors for ME/CFS identified using Combinatorial Analysis’

Kenny Baillie, Snr Clinical Research Fellow in Anaesthesia & Critical Care, University of Edinburgh: Genetics of susceptibility to critical Covid-19

Prof Doug Kell

Douglas Kell, Research Chair in Systems Biology, University of Liverpool: Post-exertional malaise as a Chronic Ischaemia-Reperfusion injury in Long COVID and M.E./CFS resulting from fibrin amyloid micro clots

Sian Leary and Andy Devereux-Cooke, DecodeME PPI: The Power of Patient and Public Involvement (PPI)

Plenary session: Feedback from workshops:

    • What would a 10-year programme of ME/CFS genetics research and follow up studies look like? How can we drive it forward?
    • How can we forge collaborative links with researchers who are not currently active in ME/CFS research?
    • How do we ensure PPI is at the heart of future genetics research?

 

Comments on the symposium stories:

ME Research UK: Genetics Research Symposium – part 1: Profs Ponting & Viken

ME Research UK: Genetics Research Symposium – Genetics Research Symposium – part 2: Prof Ponting & Precision Life

Biospace: Genetic link identified for Chronic Fatigue Syndrome could advance treatment

ME/CFS Research review: New study links 14 genes to ME/CFS, by Simon McGrath, exploring the implications of the unpublished results of Precision Life’s study of ME/CFS DNA. The study identified 15 sub-groups which now needs to be replicated with larger studies on those with a clear ME diagnosis.

Cision: New Study Reveals First Genetic Links in ME and Chronic Fatigue Syndrome Paving the Way for New Diagnostics and Drugs

New Scientist: Genes may raise chronic fatigue risk

GenomeWeb: PrecisionLife’s Combinatorial Analytics Uncovers Chronic Fatigue Syndrome Susceptibility Genes

Research preprint: Genetic risk factors for ME/CFS identified using combinatorial analysis

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ME/CFS and Falls Awareness Week 3-7 Oct 2022

Posted on 10/05/2022 by wames

Falls awareness week 2022

 

This week marks annual falls awareness week. Traditionally this is aimed at older people, their carers and professionals.  Unfortunately, you don’t have to be old to be at risk from falls when you have ME/CFS.

Falls can be triggered by:

  • muscle and joint weakness
  • orthostatic intolerance – irregular blood pressure and heart rate when standing
  • dysequilibrium -loss of balance and spatial disorientation
  • vertigo – sense of spinning or falling
  • ataxia – lack of coordination
  • blurred vision

Other things to look out for:

  • insufficient healthy food and water
  • failing eyesight
  • medications
  • failing hearing
  • get enough Vitamin D from sunlight and/or supplements to strengthen your bones
  • comfortable shoes that fit well
  • hazards around the home

 

Find out more:

Welsh Ambulance Service: Preventing a fall and advice if you’ve fallen

Carers Wales: A top tips falls guide for carers

Age Connects Wales: Take action today

Age Cymru: Falls awareness week

Dr Lucinda Bateman: Orthostatic Intolerance (includes Interventions p 25)

Adrienne Dellwo: CFS: Dizziness – problems with balance and fainting

 

NB According to Public Health Wales forecasting, more than 700 older people in Wales will die from a fall this year, with a further 7,750 requiring hospital-based treatment.  It also predicts that more than 132,000 older people in Wales will fall more than once in their home. It is estimated that the combined falls amongst older people costs the NHS in Wales a staggering £2.3 billion. [And that’s just older people!]

#FallsAwareness2022

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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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Charter for unpaid carers (Wales)

Posted on 09/28/2022 by wames

Welsh Government Charter for unpaid Carers

 

This Charter for Unpaid Carers sets out the legal rights of unpaid carers in Wales under the Social Services and Well-being (Wales) Act 2014. These rights are the same for all unpaid carers, whether they are an adult, a young person or a child.

It also references relevant human rights and principles. Raising awareness of rights can empower unpaid carers to take control and recognise when their rights are being compromised, but it is equally important to raise awareness of rights amongst professionals.

Read about your rights:

  • The right to well-being
  • The right to have information, advice and assistance
  • The right to an assessment
  • The right to have your voice heard and have control over decisions about your support
  • The right to advocacy if you are unable to fully take part in discussions yourself

Download the charter in pdf or view online in adult or youth friendly versions:     English                  Cymraeg

 

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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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