BACME -The challenges from diagnosis to treatment mean that ME/CFS can have a dramatic impact on patients’ lives.

Sly Saint · Mar 16, 2025

article
The challenges from diagnosis to treatment mean that ME/CFS can have a dramatic impact on patients’ lives. Representatives from the British Association of Clinicians in ME/CFS (BACME) provide further insights

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multisystem, long-term health condition that affects people of all ages and backgrounds and can have a profound and lasting impact on daily function and quality of life.

ME/CFS is a ‘syndromic’ condition, which means that diagnosis is based on identifying a specific pattern of symptoms while ensuring that symptoms are not due to an alternative cause. Syndromic labels are used when we recognise a common pattern of symptoms but don’t yet have the investigative tools or clinical knowledge to clearly identify the underlying pathology. By giving a condition an identity, research is facilitated, and specialist services and guidance on management can be developed while waiting for advancements in diagnosis and treatment.

Diagnostic challenges in ME/CFS
Making a diagnosis of ME/CFS is complex as ME/CFS is a condition which causes symptoms in any part of the body. As no investigations can currently be used reliably in clinical practice, the diagnosis relies solely on a detailed history taken by a clinician with a good understanding of the condition and awareness of how other illnesses may contribute to symptoms. Healthcare systems are typically divided into specialist departments focusing on one organ or physiological system. ME/CFS does not belong to any medical speciality. This leads to challenges in providing specialist services, hinders the progress of clinical research and has a negative impact on education and the dissemination of advancements. Currently, most people with ME/CFS wait years before having a diagnosis confirmed by an ME/CFS specialist. In many parts of the UK and other countries, patients have no access to a specialist service, so they remain undiagnosed or misdiagnosed.

There are many different diagnostic criteria that different organisations in different countries have developed, (1,2) which adds further complexity and confounds any research that is conducted. It is also likely there are multiple pathological processes that give rise to the symptoms of ME/CFS, and the route into the illness can be multifactorial. Factors that can contribute to the development of ME/CFS include infection, e.g. Epstein Barr (Glandular fever/Mononucleosis) and COVID, major life events such as bereavement or emotional trauma, operations, pregnancy, or a combination of events. Additionally, ME/CFS is associated with other conditions, including fibromyalgia, neurodiversity, joint hypermobility, postural tachycardia syndrome, migraine, irritable bowel syndrome, endometriosis, metabolic fatty liver disease, puberty and menopause.

Symptoms of ME/CFS
By its nature, ME/CFS is a constantly fluctuating condition with Post Exertional Malaise (also referred to as Post Exertion Symptom Exacerbation (PESE)) as the core feature. Other cardinal features include debilitating fatigue worsened by activity, unrefreshing/disturbed sleep, and cognitive difficulties, often described as ‘brain fog’ (NICE 2021). (3) Symptom changes can be triggered by different types of daily activities, including physical tasks, cognitive tasks, emotional demands, social activity and orthostatic demand (physiological demand of gravity when in an upright position). Research is more straightforward to conduct when you can control as many variables as possible. The multisystemic and dynamic nature of ME/CFS means standard research processes are often unsuitable or lead to mixed results without conclusive answers.

Future research will need to look in many directions. Autonomic nervous system research is promising as it has helped demonstrate the abnormalities that occur with circulation responses in the body, particularly abnormalities in cerebral blood flow. Two-day cardiopulmonary exercise tests have shown the abnormal physiological response to physical exercise. Still, the nature of the test can precipitate an escalation in the severity of the condition, so we need to explore ways to bring these research advancements safely and effectively into the clinical setting. We may also see progress with some blood biomarkers from the fields of metabolomics, immunology and genetics.

Currently, we support people with ME/CFS through several interventions. Education about abnormal physiological processes and how symptom fluctuations relate to everyday activities is key. Pacing every aspect of daily life is a core management strategy but is challenging to do in practice. Recognising the triggers of physiological dysregulation and using behavioural strategies that support more stable physiological functions can help bring a degree of stability. For some, this can lead to improvement in function. However, most people living with ME/CFS have to manage their condition long-term, and people who are severely affected by ME/CFS are completely bedbound and dependent on the care of others.
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https://www.openaccessgovernment.or...halomyelitis-chronic-fatigue-syndrome/189458/

Beth · Mar 16, 2025

Doesn't their severe M.E. Info/guides need changing still or is it not as bad as I'm remembering?

Jonathan Edwards · Mar 16, 2025

The article reads very much like a ChatBot answer I am afraid. It is full of medical jargon and much of it has no evidence base or real meaning. No surprises but it is a pity that this is still the sort of advice that the government is making use of.

The stuff about explaining physiology to patients is just make believe, as we all know.

S4ME fact sheets are going to be an awful lot better than this.

Hutan · Mar 17, 2025

It's not as bad as some of the drivel we have seen from BACME, with its recognition of ME/CFS as a long-term illness and acknowledgement of severe ME/CFS. But yes, still not evidence based.

Authors:
Anna Gregorowski
Chair and Consultant Nurse
British Association of Clinicians in ME/CFS (BACME)

Dr Vikki McKeever
GP with specialist interest in ME/CFS
Yorkshire Fatigue ME/CFS Service and Leeds and West Yorkshire ME/CFS Service

complex, multisystem
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I wish people would stop using these words.

Making a diagnosis of ME/CFS is complex as ME/CFS is a condition which causes symptoms in any part of the body.
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We don't know that ME/CFS causes symptoms in "any" part of the body, and, even if it did, that is not what makes diagnosing ME/CFS difficult. It is that most symptoms are similar to those in some other conditions, and that there are no biomarkers.

There are many different diagnostic criteria that different organisations in different countries have developed, (1,2) which adds further complexity and confounds any research that is conducted.
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The varying diagnostic criteria are not what confounds research. A researcher can clearly state the selection criteria they have used and get on with their study. Varying criteria might create some problems when reviews of research are done, but it hasn't been a major thing holding back research.

Factors that can contribute to the development of ME/CFS include infection, e.g. Epstein Barr (Glandular fever/Mononucleosis) and COVID, major life events such as bereavement or emotional trauma, operations, pregnancy, or a combination of events. Additionally, ME/CFS is associated with other conditions, including fibromyalgia, neurodiversity, joint hypermobility, postural tachycardia syndrome, migraine, irritable bowel syndrome, endometriosis, metabolic fatty liver disease, puberty and menopause.
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They say these things so confidently, as if they were proven facts. Most of them are not. It's a big problem when clinicians in contact with people when they are vulnerable feel that they can say these things.

Research is more straightforward to conduct when you can control as many variables as possible. The multisystemic and dynamic nature of ME/CFS means standard research processes are often unsuitable or lead to mixed results without conclusive answers.
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This is so vague, it could mean a few things, some of which are possibly ok. One reading is it is excusing poor outcomes from clinics and research into the type of therapies BACME has promoted. Lots of illnesses have fluctuations and yet these illnesses can be successfully researched.

Currently, we support people with ME/CFS through several interventions. Education about abnormal physiological processes and how symptom fluctuations relate to everyday activities is key. Pacing every aspect of daily life is a core management strategy but is challenging to do in practice. Recognising the triggers of physiological dysregulation and using behavioural strategies that support more stable physiological functions can help bring a degree of stability. For some, this can lead to improvement in function.
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Yeah, we don't know what the abnormal physiological processes are. Like so many people taking it upon themselves to advise people with ME/CFS, they get excited with the idea of advising people to use spreadsheets and coloured markers to plan their life better, with scheduled activity and rests. But you don't see a lot of clinicians lining up to support people with ME/CFS to come to terms with all the parts of their life that must be given up.

'Pacing' and 'behavioural strategies' are too often presented as being about peeling the potatoes in the morning and chopping the broccoli in the afternoon, when real adaptation is about much more fundamental decisions about work and family such as 'is part-time work going to be sustainable?' or 'who can provide care?'.

dratalanta · Mar 17, 2025

The challenges from diagnosis to treatment? There are no treatments. ME/CFS is an often devastating illness for which there are no effective treatments. That is what has a “dramatic impact” on people’s lives.

The self-aggrandising nonsense from these people is astonishing.

Trish · Mar 17, 2025

I think it's awful.

Lots of meaningless sentences, jargon, misinformation, claims they provide specialist treatments that can lead to improvement. People with severe and very severe ME/CFS are dismissed in a sentence.

I think it's probably worse than something AI would produce.

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BACME -The challenges from diagnosis to treatment mean that ME/CFS can have a dramatic impact on patients’ lives.

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