UPDATE (2nd Jun 2026): As a result of the correspondence with the ME Association, the BBC have agreed to return to ME/CFS with Dr Ranj on Tuesday 2nd June – at around 9.45am – . BBC ‘Morning Live' is broadcast on BBC1 from 9.30am to 10.45am – link here. The BBC have also published an article today featuring Dr Ranj ahead of today's programme.
Please note this message from Dr Charles Shepherd, MEA Hon.Medical Adviser: This new summary of some of the key facts about ME/CFS is based on information that was provided to the BBC by the MEA over the weekend. We did not write the actual article and only saw the final version after it had been published. Having said that I think the BBC have now provided a satisfactory explanation of ME/.CFS considering that the content is obviously being aimed at a very wide non medical audience and not just people who have ME/CFS.
On the 20th May 2026, BBC Morning Live spoke with Dr Duke about ME/CFS, and the announcement of the £4.75m UK government-funded ME/CFS genetics study – Sequence ME- which will sequence 6,000 DNA samples as follow up to the DecodeME project.
Unfortunately, the term Chronic Fatigue Syndrome is used. The MEA agrees there are ‘two major criticisms of CFS as a name are that it fails to reflect the diverse symptomatology and severity of the illness and that it has become a convenient label for anyone with persistent unexplained fatigue.'
The ME Association uses ME/CFS, the same as NHS and the 2021 NICE Guideline, however we prefer Myalgic Encephalopathy/Encephalomyelitis.
The statement on this programme about CFS being the best way to describe this disease has caused a lot of upset and complaints to the BBC.
The MEA has written to Dr Duke (as below) and we have also been in contact with the BBC. As a result it looks as though the BBC are now going to return to the subject of ME/CFS next week.
We are providing them with information on nomenclature, research, management and the DHSC Delivery Plan actions relating to very severe ME/CFS. We will share further information about possible broadcasts as soon as this is available.
Watch the BBC Morning Live segment:
Thank you Adam (AKA @BrokenBattery) for recording this clip
ME Association email to Dr Duke
Dear Dr Duke,
Firstly, thank you for covering SequenceME – the very important genetic research into ME/CFS that is taking place in Edinburgh – on BBC ‘Morning Live'
If you return to ME/CFS please could you consider covering what is the largest research study so far (being funded by the ME Association) at Imperial College to investigate the overlaps between ME/CFS and Long Covid: https://www.imperial.ac.uk/news/articles/medicine/immunology-inflammation/2025/11m-awarded-to-investigate-links-between-mecfs-and-long-covid/
Unfortunately, as you may be aware, the ME patient community was very upset when you stated that CFS is probably the best way to describe this disease.
The ME patient community really dislike the term CFS and I agree with them. It's like describing dementia as a chronic forgetfulness syndrome or Parkinson's disease as a chronic shaking syndrome.
The issue of nomenclature for ME and CFS is described in more detail here: https://meassociation.org.uk/medical-matters/items/pvfs-mecfs-long-covid/
The ME patient community therefore would be very grateful if you could avoid making this statement if you do report on ME/CFS again.
And please let me know if I can be of any assistance in relation to either research or management of ME/CFS.
Kind regards
Dr Charles Shepherd
Hon Medical Adviser ME Association
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:
- ME Association: Government announces £4.75 million funding for Sequence ME research project
- Action For ME: Sequence ME FAQ
- GOV Press Release: Thousands of ME/CFS patients to benefit from first genomics study