The Important Thing Is to Never Stop Questioning

Sunday 01 May 2022

Welcome to May’s edition of the M.E. Support Blog. This month is a significant time for the chronically ill community as it is ‘Chronic Immunological and Neurological Diseases Awareness Month’ and more specifically, it marks 30 years of M.E. Awareness Day, which falls on 12th May each year. A lot had been discussed around Myalgic Encephalomyelitis in the 30 years since M.E. Awareness Day began, especially regarding biomedical research and the medical world.

Here’s a little background on M.E. Awareness Day

Why 12th May?

This date was chosen as it coincided with the birthday of Florence Nightingale, the founder of modern nursing, who became chronically ill in her mid-thirties after returning from the Crimean War. The M.E.-like illness often kept her bedbound during the last 50 years of her life.


Who started M.E. Awareness Day?

The idea originated with Thomas Michael Hennessy, Jr., who lived with and advocated for Myalgic Encephalomyelitis.

The events of M.E. Awareness Day are, sadly, still very low-key in comparison with other awareness campaigns, as they are largely undertaken by individuals or individual organisations. To find out more about fundraising for Myalgic Encephalomyelitis, please return on 12th May for part two of the M.E. awareness celebration blog posts. Louise has a very informative page in regards to M.E. Awareness Day here on the M.E. Support website.


Why is M.E. Awareness Day so important?

Here are some statistics to get your head around:

  • 1 in 500 people in the United Kingdom suffer from Myalgic Encephalomyelitis, with a 3:1 female to male ratio.
  • There are 20,000 more sufferers from M.E. than there are from Multiple Sclerosis.
  • M.E. affects an estimated 132,000 to 264,000 people in the UK and 17 million people worldwide.

It is hard to believe with those numbers that there is still so much stigma surrounding M.E. and it is still very much under-represented and misunderstood. M.E. has been said to be ‘The disease of a thousand names’, as it has previously been known as ‘Yuppie Flu’, ‘Chronic Fatigue Immune Dysfunction Syndrome’, ‘Post Viral Fatigue Syndrome’ and around twelve other names. In fact, even now, there is still dispute over what a more accurate name for the illness should be and in 2020 the Institute of Medicine called for it to become Systematic Exertion Intolerance Disease (SEID).

Despite the fact that there have been illnesses that have had similar symptoms and as hard a diagnosis as M.E. since as far back as 1750, modern medicine still has a difficult time with diagnosis and treatment, and many doctors still aren’t convinced it’s a ‘real’ illness. Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) was formally classified as a Neurological Illness by the World Health Organization (WHO) in 1969 but up until 2021, when the National Institute for Health and Care Excellence (NICE) guidelines changed, it was still being treated as a psychosomatic illness and doctors were still using graded exercise therapy in treatment. 

Meanwhile, as these disbeliefs, questions of names and treatments circulate the medical world, millions upon millions of sufferers battle every single day, the only way they know how. It is widely agreed that more research needs to be funded to investigate diagnosis, treatment and why this illness occurs. Spreading awareness of the illness, speaking out as sufferers and gaining support is crucial for the future for the chronically ill community and for biomedical research.


Help us, biomedical research; you are our only hope

Biomedical research is our lifeline right now and it is not receiving enough, if any, funding from governments worldwide.

In August 2021, I published a blog post reviewing a book called Waiting for Superman about Ronald W. Davis PhD, who is a professor of biochemistry and genetics at Stanford University and has a son with Severe M.E. He has been tirelessly using biomedical research to find answers for the M.E. community and to finally save his son Whitney. He continues to release publications of findings, which you can find in the link provided above.

In the UK we are lucky to have some of the most established charities and organisations that are leading the fight in biomedical research. They are:

  1. ME Research UK
  2. ME Association
  3. CureME
  4. Action for M.E.
  5. Invest in ME

These charities and organisations showcase the plethora of biomedical research studies and collaborations taking place worldwide, in Switzerland, Australia, Canada, the USA, the UK, Greece and other various parts of Europe.


Money isn’t everything but everything needs money 

Funding for researching M.E. is far less than for most other illnesses and diseases. With so many questions still unanswered about M.E., it presents a bit of a ‘rabbit hole’ for biomedical research; also, as there are so many possible pathways for projects, the little amount of funding given to them just doesn’t equate to the research that needs to be done.

In 2018 The Myalgic Encephalomyelitis Action Network released an article stating Carol Monaghan, MSP for Glasgow North West at the time, had asked the Secretary of State for Health and Social Care in the UK how much his department planned to allocate to M.E. biomedical research that financial year. The response was inconclusive, only mentioning past spending, and didn’t indicate if the spending was solely for biomedical research. The takeaway from the MSP’s enquiry was that in 2017 around £507,000 was being spent annually on M.E. research; however, that figure included contributions from charities as well as £286,197 of that funding thought to be going to psycho-social research and not biomedical.

The ME Association reported that ‘Health Canada’ released a small starter sum of $1.4 million for biomedical research over the next five years.

In 2020, there was a Motion for a Resolution in the European Parliament to further fund biomedical research into M.E.


Doctors vs Scientists

One thing that unfortunately remains as prominent as ever is the conflict over M.E. between scientists and doctors.

Sadly, some of the reasons that people with M.E. haven’t been diagnosed are limited access to healthcare and a lack of education within healthcare providers. Most medical schools and courses don’t have M.E. as part of their physician training, further adding to some healthcare providers not taking the illness seriously. It is clear that more education is required for doctors and nurses to ensure they are prepared to provide adequate diagnosis and proper care for patients.

With scientists investigating neurological, immunological and endocrinological pathways, giving more and more weight to the seriousness and complexity of the illness, the medical world is starting, very slowly but surely, to change its opinion.

In 2007 a publication by M Hooper in the National Library of Medicine’s Journal of Clinical Pathology concluded:

“I propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentation. The excellent work on the biological aspects of Myalgic Encephalomyelitis, already performed by several leading research groups, now requires considerable funding that will hasten the day when this complex illness and related syndromes are much better understood.”

The Centers for Disease Control and Prevention now terms M.E./CFS as a “long term, complex and debilitating illness” and gives a much clearer and truthful perspective of the illness. Alongside that, the National Health Service website not only gives a better description of M.E. but also mentions the ME Association, so that people can inform themselves adequately.

With the last two years of the Covid-19 pandemic and the term ‘Long Covid’ appearing, there is no doubt that there will be a rise in patients who have very similar symptoms afterwards to those sufferers from M.E. have had for years. This could have positive effects for the M.E. community and biomedical research, as well as change the narrative in the medical world. Please read Louise’s extensive Covid-19 Report for further information. 


It’s been a long ride

There is absolutely no doubt that in the last 30 years there have been positive changes towards M.E. in all aspects of the illness; opinions are changing and people are slowly becoming less ignorant about the illness. However, the good fight must keep going, because there is still a long way to go. The advancements made with each biomedical project only strengthen the case we’ve been making for years, and I, for one, am confident that there will come a day when we will finally get the respect, care and answers we need. It is imperative that awareness and support continue; after all, hope is built on rebellion, and the chronic illness community deserves all the hope it can get.

Thank you for taking time to read part one of May’s M.E. Awareness celebratory blog posts.

Please do like and share this post and comment about your experience on the M.E. Support Facebook Page. You can also connect with us by using the handle @MESupportUK or hashtag #MESUK on your M.E. related photos and posts.