Will ME/CFS sufferers finally get the care they deserve due to Long Covid research and investment?
When Dr David Strain from the University of Exeter Medical School appeared in an interview on the BBC News channel on 18th February 2021, I just stared at the TV screen in disbelief. I felt like crying or screaming, but I didn’t have the energy.
How is Long Covid chronic fatigue different to the chronic fatigue experienced by those with a diagnosis of ME/CFS, or Fibromyalgia? This was one of the questions put to Dr Strain by Reeta Chakrabarti. His response was that the treatment is different, and that other chronic fatigue syndromes were treated by encouraging patients to do more each day, whereas with Long Covid patients are encouraged to rest and recharge their batteries before they overdo things.
But the treatment is not different. On the contrary, in fact. A combination of resting, pacing and grading activities is something I have been advised to do by pain management and chronic fatigue specialists over a period of about 12 years now. The battery analogy Dr Strain describes is exactly the same concept explained to myself and other ME/CFS sufferers at the pain management clinic.
Now, don’t get me wrong. I have great respect for Dr Strain, who has been researching ME/CFS for several years. I just couldn’t understand this particular statement as it just does not tally with my own experience of dealing with the condition.
Even today, ME/CFS often isn’t taken seriously by medical professionals; certainly, it has lacked all the investment and media attention that seems to be surfacing in reaction to Long Covid.
But should it matter which virus causes the post-viral fatigue? Surely, what matters is that the end result is practically the same. Loss of jobs, social life, relationships, self-esteem, hopes and dreams for the future, etc, etc. Just like ME/CFS, Long Covid affects many more women than men. Coincidence perhaps? Perhaps not.
I have never heard medical figures speak in such strong terms about supporting people through similar conditions before. Rather, if you are unfortunate enough to suffer with one of the pre-existing chronic fatigue conditions, you are either disbelieved, or doctors shrug and say there is nothing they can do.
Because of the lack of validation by doctors and successive governments, sufferers’ families and friends even start to doubt them, thinking perhaps that it is all in their heads. This doesn’t exactly help the already-fragile psychological state many people find themselves in as a result of these illnesses.
I sincerely hope that the investment the UK government is making into research about the chronic fatigue caused by Long Covid is used wisely. And I really, really hope that this research bears fruit, not just for those suffering with Long Covid, but for all of us suffering with similar post-viral conditions.