Blog

  • Signs and symptoms of ME/CFS

    Infographic. A silhouette of a man's body. Title: SIGNS & SYMPTOMS. - REDUCED COGNITION AFTER EXERCISE: ME/CFS cognition is normal at baseline however worsens. after physical exercise which indicates a state of PEM - SMALL HEART SIZE: A reduced cardiac volume associates with a part of blood volume (plasma) that is also reduced. Cardiac size not associated with disease duration - deconditioning unlikely mediator of small heart. - GUT PERMEABILITY (AFTER EXERCISE): Exercise causes gut bacteria to enter the bloodstream in ME/CFS but not in controls. - EXERCISE RESPONSE (SYMPTOM PROFILE): Multiplicity of symptoms such as fatigue and muscle pain are signiciantly incre- ased following acute exercise and correlated with changes in brain activity. - REDUCED MUSCLE OXYGEN UPTAKE Ability of cells to extract oxygen (which is needed for normal function of the mitochondria) from red blood cells is reduced compared to both idiopathic chronic fatigue and healthy controls. - REDUCED BLOOD FLOW: Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia. - NEURO-INFLAMMATION: Neuroinflammation has been found to be widespread in brain areas and associated with severity of symptoms. - REDUCED GLUCOSE UPTAKE IN MUSCLES: Impaired muscle cell 5' AMP-activated protein kinase activation, reducing glucose uptake after simulated exercise of cells. - GUT PERMEABILITY: Increased migration of the inflammatory bacterial toxin (LPS) from the gut into the circulation at rest. - ACIDOSIS OF MUSCLES: Loss of capacity to recover from acidosis of the muscle on repeat exercise. - 2-DAY EXERCISE RESPONSE (ANAEROBIC METABOLISM): Compared to Sedentary healthy controls ME/CFS switches to anaerobic metabolism more rapidly. Reduced performance is not due to cardiopulmonary deconditioning. References: [1] Van Campen, C. et al., Brain, Behaviour and Immunity, 2017 [2] Nakatomi Y., et al., Journal of Nuclear Medicine, 2014 [3] Jones, D. E. J., et al., European Joumal of Clinical Investigation, 2012 [4] Snell, C. R., et al., Physical Therapy, 2013 [5] Cook, D. B., Brain, Behaviour and Immunity, 2017 [6] Giloteaux, L., Microbiome, 2016 [7] Shukla, S. K., PLOS ONE, 2015 [8] Vermeulen, R. C. W., & Vermeulen van Eck, I. W. G., Journal of Translational Medicine, 2014
    An infographic showing some of the signs and symptoms of ME/CFS. These signs cannot be measured using the standard lab tests available to a clinician, but they have been detected in research studies. Source: https://www.mortengroup.org.uk/me-cfs/science-of-me-cfs/.

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  • ME/CFS will be taught to all medical students starting in 2024/2025 – but will the teaching be of a high standard?

    Part of the cover of the General Medical Council's MLA content map document. Title: MLA content map. Subtitle: Medical Licensing Assessment gmc-uk.org/mla. There is a black-and-white photo of a smiling young woman wearing a lanyard, and a big decorative yellow diagonal stripe.
    Cropped image from the cover of the General Medical Council‘s MLA content map.

    We were very pleased to learn that ME/CFS is included on the MLA content map, and will therefore be taught to all undergraduate medical students in the UK, starting in the 2024/2025 academic year.

    However, we have concerns. We know that currently UK doctors in general know little about ME/CFS, and tend to have incorrect beliefs about the condition.A We know that many UK medical schools have no tradition of teaching ME/CFS at the undergraduate levelB, and that few teaching materials specifically aimed at undergraduate students exist. And we know that within the medical world in generalC and within medical schools in particularD there is a deep-rooted culture of dismissive, stigmatizing, and unscientific attitudes to the condition. We are concerned that some schools may still be having ME/CFS taught by psychologists, which is wildly inappropriate – imagine, say, a class on the immune system taught by an occupational therapist, or a class on cancer taught by a dentist.

    The fact that, in the MLA content map, ME/CFS is referred to by the old, inaccurate, and stigmatizing name ‘chronic fatigue syndrome’ does nothing to instill us with confidence. If the GMC can’t even get this small but important detail right, it is hard to believe that they and other medical institutions are ready to face the challenge of ending decades of medical neglect and building a new culture based on respect for the best scientific evidence, and respect for patients, when it comes to ME/CFS.

    Delivering high-quality teaching on ME/CFS is not actually that difficult. Excellent learning materials intended for clinicians do already exist, and some of them can be found listed on our learning resources page.

    But just because something can be done, doesn’t mean it necessarily will be done. The ME community has been let down by medical institutions many times before. We have good reason to suspect that sympathetic words and good intentions might not lead to any real change.

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  • Letter to medical students from the ME/CFS Medical Education Campaign

    We’ve begun sending this letter out to medical students’ societies across the UK.

    Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating, incurable disease which affects at least four people in a thousand. Yet medical education on ME/CFS in the UK is shockingly poor.

    There have been great strides in research and clinical practice in recent years, but despite these advances medical education on ME/CFS has not progressed in the past two decades. Studies show that UK medical students are generally unaware of ME/CFS and its symptoms, and in many schools the condition is not taught at all. Unsurprisingly, research shows that UK doctors do not possess sufficient knowledge of the condition and do not feel confident treating patients with ME/CFS.

    When today’s medical students become doctors they will certainly be called upon to treat these patients, and they will be legally obligated to provide evidence-based medical care in line with the NICE guidelines – yet their schools are not preparing them to do so.

    Therefore we’re reaching out to medical students in the UK and asking them to ask their schools to provide high quality, up-to-date, evidence-based training on ME/CFS.

    There is little excuse for schools not to provide this training. The NICE guidelines, which were updated in October 2021, outline the proper diagnosis and treatment of patients with ME/CFS. Learning resources such as e-learning modules and webinars exist; see our website at https://mecfs-med-ed.org/educational-resources-for-clinicians/. For those looking for further information, an excellent starting point would be Doctors With ME, a professional association for medical practitioners, scientists and researchers in the field of myalgic encephalomyelitis; their website is at https://doctorswith.me/.

    Please feel free to contact us with any questions, or to share your experiences with ME/CFS as a medical student, good or bad. We’d particularly like to hear if there are any schools that are already doing a great job of teaching ME/CFS!

    A fully referenced version of this letter can be found at https://mecfs-med-ed.org/.

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  • Research paints a bleak picture of ME/CFS medical education in the UK

    In a hospital patient's room, a middle-aged doctor goes over a patient's chart, while a young doctor looks on.
    Image credit: Rodnae Productions/Pexels.

    Studies show that ME/CFS represents a huge gap in medical education. A survey of medical students conducted in 2022 found that the students were generally unaware of ME/CFS, and had received little or no training related to the condition. However the students were very much interested in learning about it, and the study authors noted that this represents a new teaching opportunity for medical schools.1

    “ME/CFS is a common and serious disease that many medical professionals are uneducated on… The results of the survey clearly emphasise the need for education on ME/CFS in medical schools in the UK”1

    ME/CFS is a debilitating, incurable illness that affects at least 0.4% of the population. It is highly stigmatized, with patients complaining that they routinely receive inappropriate and even harmful medical advice from doctors.

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  • Welcome!

    Welcome to the new website! The campaign is in its very early stages, but we’d love it if members of the ME/CFS community would have a look around, and perhaps let us know what you think – we can be reached at mecfs.med.ed.uk@gmail.com.