Invest In Us: ME and Long-Covid

(Just a note before we start, that this blog is my own, personal opinion and that these thoughts are my own. I am also not a medical professional)

Picture: Hannah Todd Photography

The Coronavirus pandemic is something which has taken over 2020. Conspiracy theories were circulated about how the virus started, people still don't believe the statistics are real, and it's fair to say the handling of the whole situation has been completely disastrous. 

As someone in the 'clinically extremely vulnerable' group, I have spoken throughout the pandemic about the lack of support for 'shielders' and how it has cost countless lives. 2 in 3 victims who died of Coronavirus in the first wave were disabled, and it wasn't a surprising statistic. I published my own timeline of 'support' throughout the pandemic which showed my first phone call from the shielding service, to check I had food and medication, was received over 2 months after I started shielding. On top of that, I had my care services cut, very little updates as to how to protect myself and my family, and, unachievable guidelines (like moving the disabled person out if someone gets COVID, loved that one!).

As an activist, I work closely with the disabled community and there is something which is continuously popping up. Why are people with Long-Covid getting support and I am not? And, I have a theory. (A theory, I must stress, not the answer).

If you didn't know, I have ME (alongside several other complex health conditions). When Covid first materialised, and people realised that it was having lasting health effects, everyone thought it would be grouped into Post-Viral Fatigue, or, ME. But, they've created a new syndrome called Long-Covid. 

Long-Covid has slightly different symptoms to ME, like breathlessness, palpitations, fevers, loss of smell or taste. But, after 3 months, the diagnosis could change to a Long-Covid ME/CFS diagnoses. This is because, to get diagnosed with ME you have to have the symptoms for a minimum of 3 months, whereas for Long-Covid, you need to have symptoms for more than 3 weeks. 

Treatment for ME and Long-Covid are very similar, they advise pacing, good sleep and good nutrition. However, it's understandable that the ME community are angry as the harmful GET (Graded Exercise Therapy) isn't advised for people with Long-Covid, yet, still appears on the NICE Guidelines after years of fighting to get it removed. My thoughts on that are it's much easier for them to start fresh and get it right first time with a new condition, than for NICE to own up and accept they have damaged thousands of people's health in the UK; me being one of those.

Anyways, back to the main point of the blog, why Long-Covid gets the funding. This, again, I must stress is a theory. Long-Covid has a proven cause for the condition and I think that's why it's investable. People know of the virus that's caused it, some have had it and you can easily see the research. ME, a condition which affects over 250,000 in the UK, still has no official cause. And for that reason, people still don't believe in it. I thoroughly believe that because Long-Covid is 'new' and has an official cause, the research will be ploughed into that. But, because ME has been around so long and we have yet to have a proper breakthrough, there isn't the interest. I worry that after 3 months, when this Long-Covid turns into Long Covid ME/CFS, they will receive the same treatment as we do and be brushed to one side. That's my main concern. 

The good news is, the links between Long-Covid and ME mean that any research may give more of an insight into ME, and, it is getting ME in the news a bit more. But, we deserve more. There are 60,000 people in the UK now with Long-Covid. But there are more than 4 times that amount with ME, waiting for a cure. Invest in them. Invest in us. 

Kate x

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