In general, the wider community doesn’t take the global Myalgic Encephalomyelitis/Chronic Fatigue Syndrome crisis as seriously as it should. Yes, it’s a crisis. In the UK alone, there are 250,000+ patients with an economic burden of over £3.3 BILLION per year (2017 statistics). Worldwide, most countries have not done any research into the condition or its impact on the economy. This is due to the illness not being taken seriously by the majority of the medical profession and subsequently governments around the world.
M.E. has been likened to a ‘living death’ for those patients with a severe level of severity. To be clear, M.E can kill but it is rare for M.E to be recorded as the cause of death on death certificates, again due to the notion that M.E is not a condition that should be taken seriously.
On the theme of not being taken seriously, let’s talk about blood donations.
In the UK and a couple of other countries around the world, M.E/C.F.S patients are banned from giving blood. The condition is still as yet ‘medically unexplained’ (Stripy Lightbulb CIC would argue that had more research funding been allocated to M.E/C.F.S research over the past 50 years it would no longer be ‘medically unexplained’). and as such the National Blood Service has said it is too big a risk for M.E/C.F.S patients to give blood at the current time.
Researchers and scientists have discovered that M.E/C.F.S affects the blood of patients. Our blood cells are less ‘squishy’ and don’t flow or work as they should. M.E is in blood.
The National Blood Service ban has not filtered down to every clinic nationwide. Personally, I can’t give blood due to having had cancer a few years ago so not being able to donate due to my M.E./C.F.S isn’t an issue. However, as an advocate, I have spoken to many patients who have been donating regularly for at least the past couple of years without question and, despite making their medical issues clear to members of staff at the blood bank, have been encouraged to continue donating.
Why has the ban information not been cascaded to all staff? My answer to that would be that the condition isn’t taken seriously enough. It’s just tiredness, isn’t it?! Patients will tell you, they wouldn’t wish M.E/C.F.S on their worst enemy. It’s a life-stealer.
Last week, I read that the UK Government has been selling UK blood stocks to the U.S. The U.S are then selling it on to China. IF (underlined 3 times) M.E/C.F.S can be spread through blood transfusions, this is a global problem. There are already 17-30 million patients worldwide.
As an advocate, I’ve encouraged the M.E/C.F.S community to use common sense, acknowledge the possibilities of spreading the illness (until scientists prove otherwise), and opt to not donate blood or human tissue. If medical staff won’t take us seriously, we need to do damage limitation ourselves.
Maybe, if our situation turns into a blood contamination scandal, the M.E/C.F.S patient community will finally get the recognition it deserves and the wider community will finally understand what a seriously debilitating condition M.E./C.F.S is.
Let’s hope it never gets to that.
Sign up to Stripy Lightbulb’s e-training and have your eyes opened as to the serious nature of the condition.