@river Oh no that sounds awful. I hope that it comes down a notch tomorrow. The multi task is such a horrible unfair trap! And also the doing things during pem because you feel a glimmer that it's easing. Argh I need to take that advice too. Get off of your phone @emsarah!

@dot Thank you for sharing.

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ME/CFS or Long COVID?
Both actually.

Washington Post article highlights how well-funded Long COVID research offers new opportunities to better understand and manage ME/CFS.

Read the highlights here: https://bit.ly/2ZgjcSL

#MECFS
#LongCOVID

PANCAKES gluten free, low carb

Hey friends,

For those of you who are also low/no gluten or low carb/semi-keto like me, here's an easy recipe for pancakes I've been making repeatedly. (It helps to sit, when needed :)) Also they freeze WELL (provided you pack them well) so I cook in bulk and then have enough for almost a week.

https://www.allrecipes.com/recipe/278007/almond-meal-pancakes/

Ingredients: (serves 2 - I will usually make this amount, or x 2 or x 3)

2 large eggs
2 tablespoons olive oil
2 tablespoons maple syrup (I use WAY less than this, like 1 tsp, 1.5)
¾ teaspoon vanilla extract
1 pinch salt
1 cup finely ground almond meal (often on special at coles, Lucky's brand)
1 teaspoon baking powder
1 teaspoon butter, or as needed

Directions :

Step 1
Combine eggs, olive oil, maple syrup, vanilla extract, salt, almond meal, and baking powder in a bowl. Whisk until thoroughly combined. Let batter sit for 10 minutes to marry the flavors and activate the baking powder.

Step 2
Butter a nonstick pan or griddle over medium heat. Scoop in batter into any size pancake(s) you like. Cook until edges are set and bottom is golden brown, 2 or 3 minutes. Flip and cook until slightly springy to the touch, another 2 to 3 minutes. Repeat with remaining batter.

my notes:

i like to add cinnamon to the mix. i don't measure it. just go with your intuition hehe. i use an electric beater to save my spoons. I alway put a timer on or i burn the pancakes. and i put them in a large pan, large flame, on lowest/near lowest setting, or i burn them. lol.

There's a good video in the link that walks you through it (and the guy's voice is funny as hell too haha).

Sometimes I add cacao to make some chocolate ones (need to add a bit more maple syrup b/c of bitterness), and i also often will add blueberries to the mix/part of the mix.

I like to top it with yogurt and walnuts.

It's good to find an easy recipe and then keep making it because it save son mental spoons not having to 'get your head around' a new recipe. and it works well as abase i can add other things to it. by not making them too sweet i can also add savoury toppings like cheese, or nut spreads.

anyway hope you get some joy out your meal prep. let me know if you give this one a try! 🙂

@coco We did. Medals all round. A big one for you.

🎖 🎖 🎖 🎖 🎖 🎖 🎖 🎖

@artist55 love this. My daughter made some for the football final. She can do this on her own and that is a bonus 🎄

@gretch So hard!

Sensational work by everyone involved at Emerge - done very well 🙂

@lau_ea_aus oh great not just me! It's a helpful tool, so that will be great if it can be fixed. 🙂

@lau_ea_aus Thanks! Yes initially the nurse said she had to check because it's meant to be for the elderly or disabled...but I can barely walk down my corridor now, or care for myself so I think that makes me some sort of disabled. I feel validated that my specialist agreed apparently. Also the nurse apologised for having to ask the question when she rang back, she was very kind.

@antimony There is certainly so much grief for the life your partner would be living without his illness. (Still grieving mine.)

Reading through your post, the biggest issue seems to be how to make the most of this appointment with the new GP. It is sensible to go to the new GP with a clear list and timeline of symptoms and the way life has changed. To get a useful diagnosis, the doctor needs the whole picture.

It is your partner's journey, but you are an important part of his life and, next to him, presumably the most affected by his illness.

I think my suggestion would be that you write out that timeline and list of symptoms as you see them. Especially write out clear, concrete examples.
I would include his ambitions and abilities, and how they have been affected by his chronic fatigue.
I would include symptoms from the CFS list that are relevant, eg if he has unrefreshing sleep and post exertion malaise.

You can avoid saying chronic illness and life long disability, just document the reality that you have seen. Be clear about the 6 years and the patterns you see.

Then, respecting that it is your partner's issue, I would give the list to him and ask him to consider if he thinks it represents the reality of his health issues, if it would be a good list to take to the doctor. And I would abide by his response (I hope).

A proper diagnosis is not life crushing, but a chance to make the most of that little life, and stop it from getting any smaller. Good management might even make life quite a bit bigger again.

You will sense, reading this, if it is something that may help. Ignore otherwise!

But best wishes

@coco Glad you have seen a little bit of improvement since you were last here, so good to hear that 💛💛 I thought of you on the weekend when it seemed like every mower and garden tool on my block was going 😩

@daffy_dave thank you! Yes that's the one I was thinking of but wasn't sure if my foggy brain was right 🙃

@iris so horrible to hear about this ♡

@gretch Let me know what you think. If you don't feel like listening I think she's written up the episodes as blog posts too.

@bec_em_aus Yes I gave one to my GP and she seemed very interested but that’s as far as it has got. In the meantime I’m changing my GP and clinic which I didn’t think I’d have the energy to do, and it’s a bit if a drawn out process and a long wait, but I remain hopeful.

@emergeaustralia Great encouraging news. Count me in.

@simone_em_aus this link discusses neuroinflammation, mitochondria with regard to breast cancer which may be relevant to me/cfs

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5445149/