When your body is in a permanent lockdown

The COVID-19 outbreak during the first half of 2020 made us all more aware of two things: what it is to live with uncertainty and limitations and how those who became seriously ill, suffer and struggle to survive. Many have been severely impacted by the lockdown of the economy, as the sick have been affected by ‘lockdown ‘of the body.

When it strikes you

Earlier this month was ME/CFS Awareness day. I only knew this concerned ‘disease’ but didn’t realize how severe it was, until a friend diagnosed with ME/CFS posted her moving story on Facebook. It stands for: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Patients experience continual and long-term fatigue that worsens after physical or mental activity. Millions of people suffer from it but only 1 out of 5 are correctly diagnosed. When ME/CRF patients rest or sleep, they are not refreshed. They have problems with thinking and concentrating. They experience structural pain and dizziness. One can only imagine how hard this is must for them both physically and mentally. Also in COVID-19 times, as research suggests that the immune system is involved in ME/CFS and as it can weaken the immune system.

Worldwide ME/CFS Awareness day

May 12, the birthday of Florence Nightingale, who founded modern nursing, was Worldwide ME/CFS Awareness Day. Its purpose was ‘to highlight how you can support the millions of people who suffer from ME/CFS’. Action days are great for the moment, but the need continues. Therefore regularly support the ME/CFS cause, as for patients the lockdown is permanent.

How can you help?

Every now and then, turn your day into ME/CFS Awareness Day. Impacting the worlds starts with yourself. Educate yourself and make your environment aware, donate for medical research support, and just be there for those affected. Read the CDC-page on how to help and especially the below testimony of my friend Lisa (I took the liberty to adjust her title a bit).

Some useful links

2 minute clips: What is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)How does it feel to live with ME/CFS? Patients describe what it’s likeAbout ME/CFS (CDC website)Chronic Fatigue Syndrome (wikipedia)ME/CFS Awareness Day



[tl;dr: ME is a *itch. Support the fight against this freaking illness. The people in charge don’t.]

I can’t believe we still have to say this: ME/CFS is real, people.
It can knock down anyone. Anytime.
And once it does there’s no getting up again no matter how positively thinking or strong-willed you are.
As of now, there’s no cure. Nor any approved treatment.

This illness will destroy your nervous system, your immune system, your energy metabolism, your hormone system; you’ll be a broken battery that can only be charged to 5 or 10 percent, depending on your ME stage.
Every activity — talking to a friend, brushing your teeth, or even just thinking — will cost you. And the cost is called CRASH (or PENE, post-exertional neuro-immune exhaustion),
and yes, it is what it sounds like.

You’ll also develop weird intolerances to all sensory input — light, sounds, smells, movement — and find your brain in a thick and scary fog.
A bed or couch in a dark, quiet place devoid of people: your new habitat.
You won’t be able to stop shaking your head when realizing a never-known diversity of pain and an ever-growing symptoms list.
5, 15, 30, 50, 70… Are you even alive anymore?
ME will probably not let you die (just yet), but it sure will make you lose your life.
You’ll even lose the person you used to be.

And while you are waiting and searching for a diagnosis for years or even decades, no one will believe you.
Most people will ignore you.
Others will say you’re just lazy, or quite the opposite, that you’re just overworked, that you’re exaggerating, that you want attention, that you must be suffering from a psychological trauma or depression; they’ll tell you it’s all in your head — even family members, friends, colleagues, and most of all your doctors, and you’ll see a ridiculously large number of them, because you’re desperately trying to find out what’s wrong, as you know, YOU know:
you’re NOT lazy,
you’re NOT just overworked,
you’re NOT AT ALL exaggerating,
the LEAST thing you want is attention,
you DON’T have a psychological trauma,
you NEVER had a depression,

Then, if you’re lucky, you’ll get the diagnosis. Finally! Right?
Not really: there will be no social, financial, medical, or emotional support.
Just a stigma.
And just like that you’ll become one of the #MillionsMissing.

Because research isn’t there, yet.
The amazing ME experts, and there are few around the globe, know what a devastating disease this is and have gathered lots of evidence of organic dysfunctions in ME patients (like we have killer blood that destroys healthy cells (and not just our own) — crazy stuff).
But they don’t fully understand the cause, yet.
They are fighting time.
And they call out for governmental funding for their life saving research.
But while millions go missing, politics have remained silent.
So instead of getting much needed recognition, a secure livelihood and medical care, we have to fight on all fronts.
Although many of us can’t even get up anymore.
Or speak.
Or write.

We cannot wait for politics to come around. So here’s what everyone can do to help:

• This might seem simple but: if you meet someone with ME — believe them. You might not fully understand their suffering, but don’t just dismiss them.
Help sufferers close to you with daily stuff or much needed research, because everything (getting info on your disease, finding medical explanations, educating the public, preparing for grueling lawsuits after applying for disability) lies completely on the ME people’s already broken shoulders.
Support the PR by spreading the message about the severeness of ME.
Keep your eyes open for further info (and, if need be, confirm that info with ME sufferers. There are too many misconceptions about the illness floating around).
If you are close with any doctors or nurses or are one yourself, educate them/yourself how (NOT!) to treat ME people. Incredibly much damage has been done in the health sector.
You can also donate to any of the following great organizations:
for Germany: Lost Voices, Fatigatio, Deutsche Gesellschaft für ME/CFS
international teams: OMF (esp. MayMomentum)
There are many more.

YOU really are a game changer. You can ultimately save lives by changing the conception of ME.

From our blue hearts to yours— THANK YOU. 💙