The Times published the following letters (9th August 2025) in response to the an article that covered Medical Misogyny, and where Professor Ponting mentioned it has been holding back biomedical research into ME/CFS for years.
Letters
Hope for ME
Sir, Chris Ponting says that medical misogyny has held back research in myalgic encephalomyelitis (News, Aug 8), but appropriate scepticism of scantily evidenced claims may also have contributed. Histopathology pre-dates genetic testing in medical research and remains a diagnostic linchpin.
No study has shown microscopic evidence of diseased muscles (myalgic) or the central nervous system (encephalomyelitis). The finding of clusters of genes associated with ME does not prove they are part of a disease pathway, or what that pathway is. Professor Ponting is to be congratulated and encouraged but he has plenty more research to do to demonstrate the disease process.
Andrew Millar
Wallingford, Oxon
Sir, As someone who has been severely disabled by ME for more than 30 years, I was delighted to read about the results of DecodeME. However, Chris Ponting is right to express anger that this type of genetic analysis was not done 15 years ago. As you reported (News, Jul 22), after a three-year delay, the Department of Health and Social Care has published its dismal delivery plan for ME, but it included no commitment to funding and no pathway to providing adequate services.
For decades, governments have told us they are committed to helping people with ME, but all the evidence suggests the opposite.
DecodeME has given me and millions of others hope. The time has long since passed for the government, funding bodies, medical institutions and individuals to acknowledge their mistakes, apologise to patients, and act to ensure that quality scientific research is sharply increased and patients are given access to appropriate physician-led services.
Robert Saunders
Balcombe, W Sussex
Good letter from Robert Saunders – The MEA has replied to the letter from Andrew Millar.
MEA Letter
Dear Editor
Re Hope for ME – Saturday August 9th
Andrew Millar is not up to date with research into the pathology of ME/CFS when he states:
“Histopathology pre-dates genetic testing in medical research and remains a diagnostic linchpin. No study has shown microscopic evidence of diseased muscles (myalgic) or the central nervous system (encephalomyelitis).“
Research dating back to the 1980s, using my own skeletal muscle, has demonstrated abnormalities in both the anatomy and function of mitochondria – structures that form a key part of energy production at a cellular level within skeletal muscle (references 1 and 2). More recent research has also demonstrated clear evidence of mitochondrial dysfunction in ME/CFS (reference 3).
And whilst encephalopathy is a more appropriate term for the central nervous system pathology in ME/CFS there is also solid research evidence from neuroimaging and other studies of abnormalities involving several key parts of the central nervous system (examples in references 4 and 5)
References
- Arnold DL et al. Excessive intracellular acidosis of skeletal muscle on exercise in a patient with a post viral exhaustion/fatigue syndrome. The Lancet, 323, 1367 – 1369
- Behan WM et al. Mitochondrial abnormalities in the postviral fatigue syndrome. Acta Neuropathol 1991, 83, 61-65.
- Syed AM et al. Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Physiology (Bethesda). 2025 Jul 1;40(4):0.
- Shepherd C. Is ME a neurological disease? The ME Association, 2020
- Komaroff T et al. Causes of symptoms and symptom persistence in long Covid and myalgic encephalomyelitis/chronic fatigue syndrome. Cell Reports Medicine, 2025, Volume 0, Issue 0, 102259
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
More Information
- Decode ME: Initial DecodeME DNA Results | 6 August, 2025
- Decode ME: X marks the spot where ME/CFS biology can be discovered | 6 August, 2025
- ME Association: Decode ME release initial DNA results! | 7 August, 2025
- ME Association: The Guardian: Scientists find link between genes and ME/CFS | 7 August, 2025