ME/CFS Awareness Week- what can you do?

(Reposted from Instagram)

I got ill around 4 years ago, though I had symptoms for 10+ years before that. The pandemic has shown everyone how hard it is to have our freedom taken away, yet this is an illness with so little awareness and research, you can feel invisible. There are so many who experience much worse than lockdown indefinitely, alone, without the solidarity of having the rest of the world in the same boat and with no scientists racing to find a cure. It’s repetitive, isolating, and we’re all too knackered to even go out and protest about it.

So what can you do to help?

1. Learn about the condition, talk about it, like and re-share posts like these. The more we keep quiet, the more stigma and lack of understanding there is, which is one of the hardest things about it. Join Action for M.E. campaigns, follow blogs like Mindfully Evie or Cream Crackered, write to your MP asking why there is so little funding for research and treatment. There are 260,000 affected the UK yet most haven’t heard of it. If you know someone who has it, (sensitively) ask about their experience, check in on them. Be aware it is different for everyone. What is true for one person may not be true for another, what helps one person may not help someone else.

2. Donate to the Open Medicine Foundation for research

3. Ask what your workplace is doing to support people with disabilities, in particular Energy Limiting Chronic Illnesses (ELCI). The pandemic has pushed us to be flexible in a way we were told wasn’t possible, so let’s not lose the progress. There is a pool of untapped potential in those at a stage where they could take on some work, but they need more inclusive workplaces. Can positions be advertised with remote working, part time and flexible hours? Do meetings have an option to join remotely? What are you doing to actively attract people with disabilities? Astriid is a great charity that matches employers with candidates with long term health conditions. Life of Pippa is doing a free Zoom on 10th June on Chronic Illness Inclusion: Lessons from Lockdown. For tickets see here.

4. Prevention. ME/CFS is caused by lots of factors, but for many people, including myself, a toxic workplace can be the final straw that pushes already fragile health into long-term illness. Plus, happy and healthy workers are more productive and likely to stay! What are you doing to tackle burnout culture and promote a healthy work/life balance in your job? It’s more than just putting on some mindfulness classes. Particularly if you are a manager, lead by example. Working crazy hours and responding to emails into the night creates unrealistic expectations for everyone else. Are you taking your lunch breaks and having a walk, or are you eating behind your desk and making others feel guilty for stopping? Are you praising people for coming in whilst they’re sick, or encouraging them to look after themselves? Recognise and promote employees who are more efficient, rather than those who achieve more by working unsustainable hours.

5. Show you understand and value what we have lost by taking care of your own health. I don’t mean eating some celery or going vegan. I mean how much time are you spending outdoors in natural light? How connected do you feel to others? Are you numbing out and distracting rather than feeling your feelings? Are you eating real food? Can you be still for more than 5 seconds without looking at your phone? Are you moving your body regularly in a way that feels nourishing? Get curious, start learning. Ryan Carter has some great information and Dr Chatterjee does a brilliant podcast. The avalanche of Long Covid cases highlights how crucial this is.

6. Finally, know that no one, no matter how healthy, how spiritual or “positive”, is above getting sick or having their world shattered in some way. We must do our best to take responsibility for what is in our control whilst accepting there is a lot outside of it. So appreciate each day, be present for each moment – no one knows what tomorrow may bring.

4 thoughts on “ME/CFS Awareness Week- what can you do?

  1. Hi Rachel, Another brilliant blog! So well written. Do you mind me asking what your job was before you became ill? I also worked in a very toxic work environment for several years and definitely think it contributed. Although interestingly, when I actually became ill, I had finally moved on and was in a great place (where I still am now). They’ve been so supportive of me. Take care Rachael xx

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    1. Thank you Rachael! I was working in the Cabinet Office. That’s interesting that you got ill in the better place, I can relate actually – when things got better I crashed, I think it must have been something to do with the adrenaline coming down. So glad the place you’re in now is supportive. Speak to you on Tuesday 🙂 xx

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  2. Thank you my beautiful daughter. You’ve been given such a huge life challenge and have relentlessly sought your path to overcome it. I have watched and been with you, sometimes in hope and other times disappointment and despair. But always with love and admiration. We’ve learned so much together. Sharing knowledge and raising awareness about this insidious, invisible condition is vital. The stigma must be quashed. Those now contracting Long Covid are in a similar boat. Chronic Fatigue can happen to any one of us, it’s prolonged suffering after having already suffered. Outrageously unfair. Only when you lose your health do you really appreciate how precious it is and who would have thought so hard to find it again. It breaks my heart when I know of good doctors trying to treat you, but at a loss to know what to do. And there are so many like you. It really should be possible to crack this nut, not leave it to the patient and those who love her!

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