Suicide and M.E/C.F.S

For a number of years, it has been said amongst the global M.E/C.F.S community that there is an increased risk of suicide amongst our patient population.

One research paper responsible for this belief stated;

The researchers noted that the overall risk of death in patients with chronic fatigue syndrome seemed no different from the risk in the general population. Cancer mortality was also similar. However, the findings for suicide deaths were striking—five people died during the 7-year period. Based on the suicide rate in the general population of England and Wales, the expected number would have been less than one death by suicide. In other words, suicide risk was increased almost seven-fold.

However, it should be noted that some of the researchers who participated in this research study also contributed to the controversial PACE trial. As these researchers are claiming that M.E/C.F.S is psychological and responsive to psychological ‘treatments’, it is hardly surprising that they produced research with this outcome. Not all suicides are the result of mental health issues- M.E/C.F.S is neurological, not psychological.

There is a lack of research in this area and misdiagnosis is common and so it is difficult to definitively know if the M.E/C.F.S patient community has a worrying suicide rate. I know from personal conversations online that many patients have suicidal thoughts and reach out to their virtual friends for support, but it is unclear how many take their own lives. Not every M.E/C.F.S patient uses social media either through choice or lack of functionality. I’ve lost count of how many times over the past 5 years I’ve seen long Twitter threads from patients, advocates and charities saying to suicidal M.E/C.F.S patients- ‘please hold on, research is coming’.

On Severe M.E Day this year (8th August), Janet Dafoe sent this Twitter message on behalf of her son Whitney.

“The Universe is always changing. Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I’m fighting with you. If you feel like giving up, give it to me. I will carry it for you.”

Whitney has the very worst form of Severe M.E. and recognises that patients in a similar position are looking to him for strength. If he can carry on living, so can they.

Why would there be an increased suicide rate amongst the M.E/C.F.S patient population?

• Often the severity of symptoms is intolerable.
• Patients become isolated due to ill health. Even patients with a ‘mild’ level of severity may be able to leave the house but their symptom severity means limited activities (including conversation).
• Lack of support from professionals who have a duty of care over patients makes the condition much harder to bear.
• Some patients with M.E/C.F.S can also have depression and anxiety; these are co-morbid conditions.
• Due to the stigma surrounding M.E/C.F.S and the false notion of it being psychological, patients are wary of seeking help. Globally, there is a history of patients being inappropriately and unnecessarily sectioned and so this wariness is understandable.
• Losses of many forms: identity, health, financial stability, housing, relationships, and friendships, can lead to a sense of hopelessness.

I’ve had it said to me many times that ‘M.E./C.F.S is awful, but it’s not THAT bad, is it?’. International researchers have compared Severe M.E to late-stage cancer or late-stage HIV/AIDS but with no end in sight. M.E/C.F.S can kill but most severe patients have to experience a living death for years if not decades without treatment; which is why some patients choose to take matters into their own hands.

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