Doctors with M.E. turns one this month on the same day its founder – British doctor and ME patient, Dr Hng – will never forget.
It was 29th June 2016, when Dr Hng did not go to work. She knew that if she did, she would kill a patient. Instead, the physician dragged herself to her own doctor and began the journey of learning that she had severe Myalgic Encephalomyelitis.
Even as an Honorary Lecturer at the largest medical school in the country, she knew nothing about this disabling disease. Now, she was discovering how fundamentally incorrect the medical understanding about it was.
On her fifth “sickiversary”, as some patients call the date they became ill, Dr Hng launched Doctors with M.E. to be a professional association helmed by experts who have the disease themselves.
Doctors with M.E. has since become a home for doctors, healthcare professionals, scientists and researchers with lived experience; now, increasingly, including many workers with Long Covid. “We know first hand the cruel suffering,” shares Dr Hng, “as well as the lack of help or understanding by health care systems, educational settings, workplaces and social welfare systems.”
After launch, the organisation found themselves in the thick of the highly publicised NICE dispute in the U.K. last year. “We worked behind the scenes to bring many positive changes to the new NICE guideline,” Dr Hng explains. Doctors with M.E. have now been joined by several of the NICE ME/CFS Guidelines Development Committee members as Honorary Fellows.
Formal appointments followed this early work. Most recently, Doctors with M.E. Director, Dr Nina Muirhead, has been appointed to the Education and Attitudes Working Group of the UK Department of Health and Social Care, co-chairing the committee with Medical Research Council Clinical Professor of Immunopharmacology, Professor Sir Stephen Holgate.
Working alongside existing efforts, Doctors with M.E. have become a valued voice in the global advocacy landscape, leveraging their combination of professional expertise and lived experience to deliver strategic impact in the areas of practice and policy; and they are growing rapidly.
Members have joined from across the globe, from Pakistan to Australasia, throughout America, Canada and right across Europe. Membership includes a knowledge assessment about ME/CFS, as well as subscribing to an ethical code of conduct as part of their commitment to improving patient outcomes globally.
“M.E. is one of the great public health challenges of our age,” explains Dr Hng. “We want to foster collaboration between professionals, the industries they serve, patients and the public, while empowering medics, scientists and policymakers with up-to-date practices and scientific rigour.”
Sometimes this means directly impacting clinical care, such as their securing of annual influenza vaccinations for all ME/CFS patients at Modality, the largest national GP super-partnership in the UK comprising nearly half a million patients. Other times, it looks like creating resources via their curated Education page, and acting to influence medical education for the benefit of patients and practitioners alike.
For example, Doctors with M.E. have produced a free case-based e-learning module carrying one CPD credit. They have contributed to educational webinars and produced data illustrating the state of medical education. They also worked to bring about the removal of incorrect and dangerous material from mainstream medical educational platforms.
One particularly useful resource is the Doctors with M.E. Summary Guidance.
Available in two versions – one for General Practitioners (family doctors) and one for Psychiatrists (and psychologists) – the downloadable PDFs can be shared widely by patients, charities, or anyone wanting to help spread reliable information on diagnosis, treatment and management. The files are available in multiple languages, with more translations in the works.
“These succinct yet informative handouts have been hugely popular,” states Dr Hng, “and they are desperately needed. In the wake of traditional exercise treatments being totally condemned for the harm they cause, Doctors with M.E. has stepped up to show lost colleagues what they can do instead to help their patients.”
Next on the agenda is the creation of a secure digital platform to host education and collaboration initiatives to help scale and expand this work, made possible thanks to a generous private grant for Project Florence. All the while, more experts continue to join the organisation, including the establishment of speciality sub-groups such as OTs for ME.
“We’re working to build a future where every surgery, hospital, agency, insurance provider and employer is enabled with accurate information that supports their patients, clients, shareholders and wider stakeholders,” says Dr Hng.
It seems Doctors with M.E. has made great strides already to set themselves firmly on that path.
Author: Eliza Charley
Eliza Charley is an Australian actor and writer with Myalgic Encephalomyelitis, currently living in Florence, Italy. She is committed to telling the story of ME globally and is a registered affiliate of Doctors with M.E. (Find her online @elizacharley and @HopeHeroesCollective)