May 12th: International M.E. Awareness Day

This week is International M.E. Awareness Week, chosen to coincide with the birthday of Florence Nightingale who is thought to have suffered from M.E. during the last years of her life. It is also the Awareness Week for Fibromyalgia/FMS and Multiple Chemical Sensitivities/MCS: two commonly overlooked conditions that are often co-morbid to M.E.

Despite being an extremely common and disabling multi-systemic disease M.E. remains one of the most misunderstood, stigmatised and underfunded illnesses in the world today. So in honour of M.E. awareness day, I have compiled a list of facts the average person may not know about the disease:

  • M.E. is classified as a neurological disease by the world health organisation.
  • It affects an estimated quarter of a million people in the UK, 17 million worldwide making it twice as prevalent in the UK as MS and three times as prevalent as HIV or breast cancer.
  • M.E. affects both men and women. Children can also be affected too and it is one of the most common causes of long-term school absence.
  • More than half of sufferers are too ill to work, a quarter severely affected to the point of being bedridden or housebound, often for years or decades. This amount to billions of pounds of lost productivity not to mention welfare costs each year globally.
  • Despite its white, middle class reputation prevalence studies suggest M.E. is most prevalent in poor black and Hispanic communities in America and the Pakistani community in the UK. Limited research suggests the prevalence may be even higher in non-Western nations though limited access to health care and low awareness makes diagnosis less likely.
  • M.E. causes dozens of neurological, immunological, autonomic, cardiac and metabolic symptoms. The most severely affected may be tube-fed, oxygen dependent and require round the clock care. The daily difficulties of living with these symptoms often result in secondary mental health issues.
  • Although the cause is not currently known many neurological and immunological abnormalities have been found. These findings are rarely taught in medical schools meaning many doctors wrongly believe M.E. to be psychogenic and few know how to diagnose or treat the illness.
  • Delay in diagnosis or inaccurate advice in the early stages of illness dramatically increase the likelihood of permanent disability. It is common for patents to wait several years for a diagnosis.
  • There is currently no cure or proven treatment for M.E. The NHS offers only psychosocial treatments despite substantial evidence to suggest these treatments may be harmful for a significant percentage of patients. The media commonly tout these treatments as sure-fire cures and patients are pressured into accepting these treatments or blamed when they fail to produce a recovery. As only outpatient care is available, the most severely affected patients commonly receive no medical care at all.
  • The mortality rate for M.E. is estimated at around 3-6 percent. The recovery rate is estimated to be similar. Lack of adequate research mean no accurate figures exist for either. Although a degree of improvement is possible for many patients, the relapsing remitting nature of M.E. makes it uncertain whether full recovery is truly possible as it is common for symptoms to recur, sometimes after years of remission.
  • Biomedical research is chronically underfunded compared to equivalent conditions. More money is spent globally on research into male pattern balding than is spent on M.E. research. The US government spends $6 million on M.E. research per annum compared to $21 million for migraines, $50 million for ALS, $105 million for MS, $404 million for depression and $704 million for breast cancer. The UK government doesn’t spend even this paltry sum, with what little money our government occasionally does allocate for ME more likely to go into psychosocial than biomedical research.
  • Studies have found M.E. to be as/more disabling than MS, Lupus, heart disease and cancer. In its severe form, specialists have described M.E. as being more disabling than AIDS and terminal cancer until the final days of life.

If you haven’t done so already, please consider posting something about M.E. on your own blog or social media page this week (perhaps one of the articles linked below) and/or make a donation to biomedical research.

Thank you.

‘ME isn’t tiredness.’

‘No, I’m not just tired.’

‘Here’s what living with ME is actually like.

”Living with Chronic Fatigue Syndrome.’

This entry was posted in Hidden Disability, ME Awareness Week, Myalgic Encephalomyelitis (ME) and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

4 Responses to May 12th: International M.E. Awareness Day

  1. Reblogged this on sondasmcschatter and commented:

  2. vjearle says:

    Thanks for this. Recently, in the U.S., there has been a movement to change the name of the disease to SEID (systemic exertion intolerance disorder), a much more appropriate title. Miami has a research /treatment clinic which is overwhelmed with patients. In Canada, we are currently without specialty care in this area. To travel to Miami (if they are accepting patients) costs upwards of $10,000. There is so much work to be done to draw awareness to this disease.

  3. Reblogged this on Sunshinebright and commented:
    This is a huge Awareness week for ME (also Fibromyalgia and Multiple Chemical Sensitivities). Much preparation has gone into promoting awareness of this (ME) debilitating disease that takes patients’ lives away as they knew it before illness. I’m reblogging in order to continue promoting this disease so that more people might understand it. Well written.

  4. currankentucky says:

    Thinking of you, as always. x

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