For too long Chronic Fatigue Syndrome (CFS) also known as ME has lurked in the shadows. Medical practitioners, friends, families, life partners, colleagues and strangers dismissing it as “you are just tired”. If only it were that simple.
CFS/ME is not a new condition. Documented cases go back decades but it is a condition that has been misunderstood and often ignored by the majority of the medical community.
Tens of millions of people suffer from CFS around the globe. CFS is the invisible illness –those with the condition often from the outside look fine. Inside, their body and mind are unable to function.
I consider it to be a spectrum disease with different ranges of severity which are different for each person. Each day is different for anyone with CFS.
Even for those on the less acute end of the spectrum (where I would place myself), life will be dramatically changed forever. Those with acute CFS are often unable to leave their bed and have no choice but to stop working.
There is no cure. There is no test. It is heartbreaking.
What is CFS/ME?
“CFS/ME is an extremely complicated disease involving the immune system and the brain and who knows what else”
Professor of Biochemistry and Genetics and CFS researcher Ron Davis, Stanford University
The CDC states a diagnosis of CFS/ME is possible if the patient has unexplained, persistent fatigue present for 6 months or more that is not due to ongoing exertion; is not substantially relieved by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.
And – Four or more of the following symptoms are present for six months or more:
Impaired memory or concentration; Post Exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity); Unrefreshing sleep; Muscle pain; Multi-joint pain without swelling or redness; Headaches of a new type or severity; Sore throat that’s frequent or recurring; Tender cervical or axillary lymph nodes
A glimmer of light
The broader medical community is starting to pay attention.
In 2015, the Institute of Medicine in the US officially classified CFS/ME as a disease and proposed a new name – Systemic Exertion Intolerance Disease (SEID), this name continues to split the community at large. Their extensive literature review resulted in the following statement:
“CFS/ME is a serious, chronic, complex, multi-system disease that frequently and dramatically limits the activities of affected patients.”
Soon after the Director of the US National Institutes of Health (NIH) stated it would support basic science work – finally some funding!
Whilst the funding is substantially below that of other conditions which affect similar numbers, the NIH increased their spending on CFS/ME from US$6 million in 2016 to US$15 million in 2017 which included funds for four CFS/ME research hubs in the United States that will receive US$36 million in funding over the next five years.
Physicians used to dismiss the disease as psychosomatic, but studies now suggest that it involves problems in the chemical reactions, or pathways, within cells. “We now have a great deal of evidence to support that this is not only real but a complex set of disorders,” says Ian Lipkin, an epidemiologist at Columbia University in New York City. “We are gathering clues that will lead to controlled clinical trials.”
In the UK, the National Institute for Health and Care Excellence (NICE) last updated their guidelines on chronic fatigue syndrome/myalgic encephalomyelitis diagnosis and management in 2010.
In early 2018, NICE held the first of a series of workshops with stakeholders to commence the process of updating the guidelines on the approach and treatment of CFS/ME.
UnRest – Documenting living with CFS/ME
I discovered an amazing gift, the documentary Unrest by Jennifer Brea, herself a CFS/ME sufferer who bravely documented her and her husband’s struggle and the struggle of so many around the world. Whilst heartbreaking to watch it is also a story of hope and resilience and an insight into what it is truly like to live with CFS/ME.
She has sparked a movement #millionsmissing #meaction
I consider myself recovered, I am healthy, I get the occasional cold and virus here and there which can be scary as there as so many similarities between that and the early days of CFS. I do have some legacy challenges such as short-term memory loss, gut imbalances, and a sub-optimal immune system.
The life I live now is both different and similar to the one I had before. Health is my top priority, I know when I have pushed myself too far before reaching burnout, I know how to take care of myself while still pushing my boundaries.
Through CFS I changed the direction of my life and for this, I am forever grateful. It’s through Wild Orange I share many of these learnings.
I detail my recovery recipe in another post. I call it my recipe because what worked for me, may not work for everyone, it is trial and error.
I had to learn patience and tenacity, self-compassion and to never give up hope.
Things are changing, the light is finally shining on CFS.
If you think you may have CFS/ME below are some resources that can provide you with information and contacts for ongoing support.
- UK – http://www.meassociation.org.uk/information-and-support-line/
- USA – https://www.cdc.gov/me-cfs/
- International – http://iacfsme.org/