New video: Supporting Children!

Supporting Children with Fatigue is the latest video in the COFFI Consumer Dialogues series created by the COFFI Consumer Advisory Group. It features a panel discussion created to support parents of children and adolescents living with fatigue and related conditions. The discussion aims to help families better understand these conditions and explore what may be helpful when supporting a child through illness and recovery.

The panel brings together people with lived experience alongside clinicians and researchers working with children and young people affected by fatigue, ME/CFS, and post-infectious conditions, including Long COVID.

Panel members share perspectives on recovery, clinical care, and family support, drawing on both personal journeys and professional experience. This conversation reflects a range of viewpoints and approaches and is intended to promote understanding, reflection, and constructive dialogue.

COFFI does not endorse any specific treatment model, therapy, or recovery programme. The views expressed are those of the individual contributors and are shared to support informed discussion between families, clinicians, and researchers.

Response to DecodeME Preprint

Statement from researchers and consumers from the Collaborative on Fatigue and related symptoms Following Infection (COFFI)

The DecodeME study is the largest of its kind to date, but its findings need careful interpretation. They are not a groundbreaking, and we are concerned with the way these preliminary findings are being promoted.   Once replicated, they may be another piece of the puzzle in understanding mechanisms behind ME/CFS.

Background

We know the condition is real and our genes are implicated

1.       We recognise the need for  high quality research to better understand the underlying biological mechanisms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

2.       A recent genetics analysis in people with ME/CFS was made publicly available as a pre-print prior to peer review. This research is a helpful contribution to the knowledge base. The researchers sought genetic markers associated with the condition through a genome-wide association study (GWAS). This study, called the DecodeME project, has attracted press headlines and many contain strong statements from the study authors, for example:  

“These results are groundbreaking. We have gone from knowing next to nothing about the causes of ME/CFS to giving researchers clear targets.” (Sonya Chowdhury, author).

"For so long people with ME/CFS have been told it's all in their head. It's not. We see it in their blood." (Chris Ponting, senior author).

3.       The messaging has created widespread excitement and raised expectations in both the research and patient communities. The research has been presented as ground-breaking and heralding an imminent cure.  

COFFI response

4.       The researchers of the Collaborative on Fatigue and related symptoms following Infection (COFFI – www.coffi-collaborative.com) and their Consumer Advisory Group (CAG) were surprised by the hyperbole in reporting the findings. COFFI researchers and consumers have recognised this condition as real for more than 25 years and recognise that the research into the genetic link has long been established, although perhaps not with specific predisposing genes implicated.

5.       In the light of these concerns, the COFFI consumer advisory group and the COFFI researchers provide a commentary.

COFFI consumers’ commentary

Views on the hyperbole

6.       The effort put in and the size of the study is impressive and this adds useful knowledge. However, the study authors state that showing an association with genes somehow demonstrates that the condition is “real”. This is not particularly useful, because we already recognise the condition is real.

7.       Genes are part of the picture, but there is a danger with this emphasis. The statement “we see it in the blood” implies for consumers that genes “cause” the condition. This statement may contribute to some patients believing nothing can be done unless we get a biomedical cure.

8.       This narrative may lead them to believe the condition cannot be influenced by approaches based on a biopsychosocial approach, which is clearly helping many people to reduce symptoms and some to recover.

9.       The hyperbole around research showing genes influence risk in ME/CFS has happened before: 20 years ago a press release stated that researchers were close to finding the genes responsible for ME/CFS, and that they expected to have treatments within a year. At that time, patients waited for a cure, but nothing appeared, and patients deteriorated in the meantime making recovery harder.

Research on practical measures that help needed

10.  The article states there are no effective treatments, but this is incorrect. There are a range of strategies for rehabilitation, drawing on the biopsychosocial explanation of this condition. These include cognitive behaviour therapy, approaches to safely increase activity and mind-body approaches. The research indicates these options may help people reduce symptoms and ensure some recover. Putting patients on hold with this condition awaiting a drug could be unhelpful.

11.  We also know that recovery is possible, and question why recovered patients were not included in the genetic analysis. Maybe this is a question to be added in further research. It would be interesting to know whether genetic, environmental, or psychological factors influencing the occurrence, severity and chance of recovery.

12.  In summary, the Collaborative consumers noted the emphasis on genetics does not help people currently with the condition. Genetic studies can expand understanding, but people with ME/CFS also need practical answers now. Research into treatments, rehabilitation, and support strategies must remain a priority.

COFFI researchers’ commentary

Findings interesting but not ground-breaking

13.  The COFFI researchers considered the study. We note its size, and that the genetic traits related to brain and immune function, which supports what we already know. 

14.  We all recognize that persistent fatigue, like many conditions (including cardiovascular disease and depression) has a genetic component, so genes can influence risk of developing the condition. We also know that this genetic contribution to risk is likely not to be from one gene but from several (“polygenic”).

15.  We note that the eight genetic markers reported in the pre-print were associated with the condition, but the size of the effect found were modest. This means that the same genetic markers were also present in many healthy control participants. This makes their isolated interpretation limited. Further analysis looking at various gene combinations may be more informative.

16.  Like other conditions such as heart conditions or depression, the heritable component, the genes, are only one influence on the risk of developing the condition. Most human illnesses result from very complex interplay between many genetic factors, and things that people are exposed to throughout their life.  

17.  We also know that genetic influences can be altered by environmental exposure. This phenomenon, known as epigenetics (how our environment can switch genes on or off), was not examined.

Patients varied, and the study requires peer review and replication

18.  We note that the ME/CFS diagnosis was based on self-report. This means the patients will be quite varied, and only a small minority reported onset with a documented infection, whereas fatigue conditions can arise because of many different precipitating causes. This wide variation in the patients may well lead to flawed positive associations with genes that have no influence; and on the other hand, may miss actual associations.

19.  The findings are yet to be peer reviewed, which may alter the interpretation, and all good science the analysis needs independent replication. The DecodeME researchers themselves state they were unable to identify the specific genetic markers in other large data samples they had access to and this is important.

20.  In summary, this large study has some interesting findings with specific genes identified. This is a contribution to what we know already, and needs replication.

COFFI Consumer-researcher Online Seminar IV - Where lived experience and science meet

“Persistent symptoms after infection - what is going on in the brain?”

was live 25th March, 2025

Link to the recording of the seminar HERE!

Persistent symptoms are part of post-viral fatigue, ME/CFS, and the post-covid condition. This seminar considers the wide variety of symptoms and problems encountered by patients, looks at the overall explanation from physiological stress response, and then considers how approaches may help people with symptoms.

The seminar is aimed at health professionals, patients, practitioners, carers, and journalists

To attend, please register here

Background to COFFI

COFFI is a global research collaborative dedicated to research to help explain, treat, and manage fatigue and persistent somatic symptoms following infection. The COFFI Consumer Advisory Group advises on COFFI’s research portfolio and promotes constructive public narrative between patients, researchers, and practitioners. These groups must work together to help people manage and recover from these conditions. Our previous COFFI Consumer-Research Seminar was on post-exertional malaise.

Contributors 

	Rachel Whitfield Leadership Trainer and Coach Bristol, UK Co-chair COFFI Consumer Advisory Committee COFFI Rachel Whitfield developed long covid during the pandemic and has now fully recovered. She has since told her story multiple times to the BBC and ITV as well as a variety of podcasts, YouTube channels and her blog, helping many people find a path to recovery. With a background in biochemistry, she is now a leadership trainer and coach.
	Julie Black Scientific Advisor to the UK (and devolved) Governments. Scotland Julie Black, in her spare time, looks after three horses and rides around Scotland'shills. She developed the post covid-19 condition, was bedbound, and given a diagnosis of mast cell activation syndrome and postural orthostatic hypotension. Once understanding dysautonomia, she worked on how she was responding to various stressors, delineating her path to recovery.
	Vanessa Wilhelm Business Development Manager Scotland Vanessa Wilhelm developed long covid during the pandemic and has now almost fully recovered. She has since told her story on the Living Proof blog  and is active in various mind-body support groups. Vanessa has a background in policy research and currently works as a business development manager.
	Dr Anna Andreasson Assoc. professor in psychology, Stockholm University, Sweden Assoc. professor in clinical epidemiology at Karolinska Institutet, Sweden Guest Professor in Pain and Rehabilitation Medicine with focus on Psychoneuroimmunology, Linköping University, Sweden Anna Andreasson is a scientist examining how individuals perceive their own health from a psychoneuroimmunological perspective. Anna is especially interested in symptoms of sickness that arise when the immune system is activated, and how they may contribute to persistent symptoms such as fatigue, pain and symptoms seen in disorders of the gut-brain axis, such as irritable bowel syndrome.
	Maria Pedersen Paediatrician and postdoctoral fellow Oslo, Norway COFFI Researcher Maria Pedersen provides clinical care for  people with long-term fatigue.  Her doctorate concerned adolescents with fatigue after the Epstein-Barr virus; her current research is in treatments for adults with post-COVID-19 conditions. Maria is also part of the Norwegian National Competence Center for CFS/ME and the Paediatric Neurology Section at Oslo University Hospital.

Timetable

Time (UK)	Title	Presenter
18:00	Welcome and introduction	Rachel
18:05	Experiences of disturbing biological experiences	Julie and Vanessa
18:10	What is going on: the physiological stress response	Anna
18:20	Resonance with lived experience	Julie and Vanessa
18:25	Approaches that may help resolve symptoms	Maria
18:45	Discussion and questions
18:50	Questions from the audience	All
18.58	Closing	Rachel, Anna, Maria

To keep up to date with live events, please email coffi-collaborative@outlook.com