ME & long covid (my thoughts) …

Of late it seems like long covid gets more publicity, and definitely higher research funding, than ME does. I know it is to be expected that it will get publicity as it is new, and it is linked with coronavirus, which scares people and is pandemic. But, it really does seriously bother me that, on top of all this, having long covid gives you more credibility than having ME does. Honestly. It does, for now anyway, just research it!

a brief history of my ME …

I have been ill since 1984 and was only diagnosed with ME in 2001. Initially, I was mild, but as the years have gone on I have flitted between high functioning moderate and low functioning moderate. However, since 2016 I have been severely affected and since around late 2017 to early 2018 I have been unable to leave my home except for emergencies and medical appointments. I spend at least half my week in bed and the rest lay flat on the settee, which I guess is just geography and in reality I am also bedridden.

a brief history of ME …

The first recorded outbreak of epidemic myalgic encephalomyelitis was in 1934 in Los Angeles and was thought to be an outbreak of atypical polio. After the outbreak in Akureyri, Iceland, in 1946, the disease came to be called “Akureyri Disease” or Icelandic disease through much of the 1940s and 1950s. It was named myalgic encephalomyelitis after London’s Royal Free Hospital outbreak in 1955. Other names included benign myalgic encephalomyelitis and epidemic neuromyasthenia. After the Incline Village outbreak in Nevada in 1984, the disease came to be called and redefined as Chronic Fatigue Syndrome. (taken from ME-pedia where a more detailed history can also be found)

a brief history of long covid …

Most people who catch the coronavirus SARS-CoV-2 are either asymptomatic or have only a mild illness.  If symptoms of Covid-19 develop, they typically appear within 2-14 days of being infected and last for a couple of weeks. Sadly, around 1% of those who catch the SARS-CoV-2 virus die. Fortunately, as we have got better at treating severe cases, survival rates are improving.

But as the pandemic enters its second year, it is now clear that beating an initial infection from this virus is not the end of the story. For a significant proportion of people, Covid-19 is turning out to be a long-term illness – a condition that has become known as “Long Covid”. 

so why …

So why is long covid getting so much more attention than we, as long term, ME sufferers get?

I am not even going to attempt to answer this question but I will say is …

it is bloody wrong and I find it so disheartening that I may well end up dying of ME while the people who have long covid, and have had it for far less time of their lives, will get assistance, support and maybe even cured …

are ME & long covid the same …

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, has speculated that long COVID likely is the same as or very similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

why has ME been ignored for so long …

ME is the biggest scandal to ever hit the medical profession. Any doctor, GP, professional who has claimed that ME doesn’t exist, or is in the patient’s head, ought to hang their heads in shame …

And those who have ever prescribed GET or CBT ought to be medically struck off and sued …

in summary & in conclusion …

What can I say …

I feel there will come a time, quite near in the future, where I, and lots of other ME sufferers, will begin to wish we had long covid rather than ME …

my husband suggests that I tell people I have

long glandular fever …

rather than saying I have ME …

I want to write more about this topic but right now I feel way too bugged about this matter.

Please feel free to contact me to share your outcomes or with any questions you may have.

 fragmented.ME xXx