Research and Patient Advocacy

I am an unsalaried research fellow at the University of Manchester who relies on grant income and support from charities and donors. Over the past 10 years, I have been a committed advocate for people with Myalgic Encephalomyelitis (ME)/ sometimes called Chronic Fatigue Syndrome (CFS). Over those years, I have published many research papers on different aspects of the illness, particularly treatment. I was instrumental in raising awareness about the flaws in major clinical trials, such as the PACE trial, that claimed great success treating ME/CFS with either CBT or Graded Exercise Therapy (GET) along with standard medical care. I highlighted major problems with the trial’s methodology, some of the conflicts of interest the lead researchers possessed and concerns about how improvement and recovery were measured. I undertook a meta-survey analysis and showed that to the contrary, most patients found Pacing approaches more beneficial and few found GET helpful, in fact, a significant proportion of people with ME/CFS found GET harmful.

I wrote a detailed paper on the lack of scientific merit underlying the CBT Model of ME/CFS. I added papers on Harms associated with the biopsychosocial approach to ME/CFS and medically unexplained symptoms. With my colleagues at Manchester University and elsewhere, we have written about our concerns in professional journals, such as the British Journal of General Practice, that is read by working frontline GPs. My goal has been to focus on education of health professionals, this is one way we will improve care for people with ME/CFS.

NICE Guideline Changes 2021: Thanks to my work and the ongoing work of other ME/CFS researchers and patient advocates, NICE UK undertook a review of evidence and decided to withdraw GET as a recommended treatment for ME/CFS, and to change how CBT is to be offered. People with ME/CFS will now be offered advice on pacing and energy management. There is more work to be done to ensure these guidelines are implemented correctly and are understood by frontline health care professionals.

Doctors with ME (DwME): In 2021, I had the privilege of being made a director of Doctors with ME, working alongside my fellow directors, we are doing a great deal of work to educate health care professionals, engage researchers and clinicians and promote awareness of ME/CFS.

Publishing: I have published a number of papers in 2021, I have two in submission and 4 others to bring to publication. I am running my 2022 Crowdfunding campaign for a few weeks in late March-April. I ran this in April 2021, and thanks to your support, I was able to totally focus my attention on ME/CFS this past year. There is much more to do, and we need more hands-on deck to get even more done, so your support this year is vital.

WHERE WILL THE MONEY GO?

All funds donated will be used on research costs. It costs around £50,000 to salary 1x research fellow per year on a full salary (total salary and benefits), it costs around £40,000 per year for a research associate. Your donations will help part-cover my salary costs to dedicate as much of our time as possible to ME/CFS in 2022-2023. All expenses involved in what I do are covered by Crowdfunding.

Thanks to a Question from a Person Yesterday - They wanted to know more about what I would be doing this next year: ::

I work on the interface between primary care medicine (so when you see your GP or get medical care in the community) and health psychology. This covers a wide variety of topics, but I boil it down to trying to get drs to treat ME patients better today, whilst we seek out biomedical understanding of the disease. This involves debunking the bad science that exists around ME, such as the CBT Model of CFS - see my papers on that on Researchgate website; educating doctors and nurses, exploring risk factors for development of ME and developing treatment protocols that can be put in place instead of graded exercise and CBT.

It also involves a lot of health policy work, looking at NHS treatment pathways and policy < eg via sending patients to IAPT for CBT and challenging the rationale for that via my papers and highlighting the lack of data to support such pathways. I have written papers on IAPT and plan to do more. I am currently trying to write a paper on the theory of medically unexplained symptom treatment also, which includes ME/CFS. I am writing another paper on the cost of MUS, and ME, to the NHS. The cost is often over-hyped. I have also almost written a paper on Disability Benefits and ME and the Psychiatric Theory of ME, that I would like to get out published.

I explore the methods used to test CBT in trials, these are complex and I plan to write some more papers on the problems with cetrtain trials and their findings, - my most recognised paper to date has been PACe-GATE, and a special edition on the PACE trial. Much more work is required in this area to detail problems with RCTs. This may alert others to the fact that the evidence claimed, is not strong and has many validity issues. I mentor drs and students and try to get them involved in ME, I peer reviewer papers submitted to academic journals and organisations, on ME, and through that work I get to shape the future direction of ME science.

There is a lot more I do daily, but this is an overview. If you have any more questions feel free to ask via twitter or other..

COMMUNICATING MORE

In 2021, I promised to set up a dedicated website that will host media, videos and podcasts discussing our work and more. This didn’t happen, mainly because a great deal of time, many months in fact, went into advocating for ME/CFS before and during the NICE round-table meetings to decide the final version of the ME/CFS treatment recommendations. This process lasted many months, so delayed my ability to focus on social media, bar my twitter feed. I wish to make my research findings much more accessible to all and I want to engage more with people living with ME/CFS.

Social & other Media Plans: I am about to launch an ME/CFS science channel to publish online content, such as videos or podcasts on different aspects of ME/CFS science. The first short video is almost ready and will be posted very soon (before or in April 2022.

I hope this has given you an insight into some of the work I have been doing over the past year, it certainly doesn’t cover everything, including peer review work, meetings, scientific conferences, and grant applicant drafting and submissions, but this is all part of what I do on a daily basis in my ME/CFS work. I am very passionate about this work and hope to continually do more to help improve the lives of people living with ME/CFS.

Thank you all for your support!

Keith