Top 6 posts for ME Awareness Month

May is ME Awareness Month (along with literally every other illness, it seems). I’m too despondent to write something new, so I figured I’d recap my top 6 posts regarding ME/CFS and chronic illness in general.

1. A Dummies’ Guide to ME/CFS

I think I started off my blog with this rather ambitious 5-part series about ME/CFS. Besides more recent research findings, it covers near everything I know about the illness. If you want a shorter summary, try my article for MamaMia, “Seven things you probably don’t know about chronic fatigue syndrome.”

2. Chronic Fatigue vs “Chronic Fatigue Syndrome” (ME)
ME sufferer Whitney Dafoe as a young healthy man, and bedbound from illness, his father shaving his head.
Whitney Dafoe, one of the many faces of ME. From healthy travel photographer to bedridden and paralysed.

I wrote this for the May 12 Blog Bomb last year, and it’s still relevant – the conflation of a generalised sense of fatigue and the specific illness ME/CFS does a great deal of damage to the ME/CFS community as a whole. Check out my article to read the differentiation between the two.

3. Betrayed – a brief summary of the PACE trial
An ink sketch and painting of a seated woman. She looks down pensively. Red flames emerge from her back.
Artwork by Beth Raven

I daresay there has been no greater harm done to the ME/CFS community than that inflicted by the PACE trail, an abysmal betrayal of both science and chronically ill people which led to potentially harmful interventions being recommended to ME/CFS patients for years.

Last year, raw data from the trial was finally revealed in a prolonged court case, and I wrote about the duplicitousness, cherry picking and biases which promoted this farce of a study to the pages of The Lancet.

4. Handy responses to commonly heard phrases

Cartoon woman. Text: being as beautiful as I am is such a curse.

After that heavy reading, I feel like some laughs are in order (and yes, I’m THAT person who laughs at their own jokes until they cry). In this post, I give some handy snap backs to the kind of shitty comments chronically ill people hear every day.

5. Six Things You Can Do For Your Chronically Ill Friend
A man from The Simpsons pretends to walk down stairs behind a bench.
Not exiting stage left is one of them.

Sometimes, friends and family of those with chronic illnesses want to help, but don’t exactly know how.* I’ve shared six tips for how to best support the chronically ill people in your life.

 6. On Being “Nice”

You get proud by practicing. This is possibly the most important thing anyone will ever tell you. The journey towards disability pride is long, and hard, and you have to practice every single day. - Stella Young

You know what I’m sick and tired of (besides being sick and tired)? The expectation that minority groups such as ME/CFS patients should sit in complacent silence while being at best dismissed, and at worst attacked. Spreading awareness is a great start, but a cause was never advanced by being “nice” – let’s start disrupting things and make some noise.

 

 

*We’re talking best case scenario here. I’m sure any chronically ill person has a story or two about those who pledged support then did a runner when things got mildly difficult.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

10 thoughts on “Top 6 posts for ME Awareness Month”

  1. And had you not put together this post I would have been totally unaware of Me awareness month . Mmmmmhh… think that’s saying something right there.

    Sharron

    Liked by 1 person

  2. This is a great resource.
    Until I learned about your ME/CFS I don’t think I would have known anything either.
    This post is a great resource I can share with others.

    My friends and I with MS get our own idiotic judgments passed on us that are oddly different. Things like we are pretending to have MS. Mostly because we don’t look like we have it. So MS is a valid disease – we are not valid. And yes exercise is supposed to be so good for us with MS too, exercise being the cure all for everything. Both of the general practitioner women Drs I’ve just had are runners. As I mourn the loss of mobility they cheerfully run on and judge.
    ugh

    Like

  3. Great round-up of posts! I’ll go through these to make sure I’ve checked them all out. You’ve certainly covered a lot of ground and different aspects so this is perfect for ME awareness time! 🙂

    Liked by 1 person

  4. Emotionally reeling today after seeing all of yesterday’s post, good tears, sad tears, all the tears, as well as wishing I could have better participated. As luck would have it I had therapy yesterday…I’m very certain my therapist was left wondering if I was every going to stop tearing away. So thank you for bringing me a chuckle today with #4. 🌸😁

    Liked by 1 person

    1. It has been such an emotional month. I wish I could do more but I’m really struggling mentally right now and even the little I did was such a struggle. Glad I could bring you a laugh.

      Liked by 1 person

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