Waxing lyrical: ME Awareness

Everyone has had the experience of finding song lyrics meaningful to their circumstances, despite this not being the original purpose of the lyrics. An ME Awareness Day playlist with some explanation could be a new angle to help you understand my experience.

Metaphors in ME

Woman inside a bubble

What metaphors or images would you use to describe your experience of ME?

Review: Can Post-Exertional Malaise make a Placebo Effect seem like a Nocebo?

Does Post-Exertional Malaise lead to unusual Placebo Effects in ME that seem more like Nocebo? This post explores my experience of a Placebo controlled experiment.

Is it About Getting Better or NOT Getting Worse?

Is it not so much what you do as what doesn't happen that determines recovery from ME? Musings in light of the finding of little difference between treatment groups at the PACE follow up. Is relapse more important than improvement? Tips for preventing relapse.

Resource: Walking Problems

This post includes tips that may help you with walking and muscle problems. Topics covered include mitochondrial function (MitoQ, D-Ribose, AMPK activation), lactic acid, electrolyte balance, autonomic function, pacing and adapting. Please comment on what I've missed out.

Review: Mendus and a Quantified ME

Join Mendus studies, data is considered more powerful if there’s more of it. If you join in with the Diet Study it will be become slightly more powerful than it is today in representing genuine effects in the ME/fibromyalgia population. With more participants these Mendus studies could also have greater power in a normal sense: they will make more noise and people will take more notice. This is your chance to get personally relevant answers to some niggling questions without having to wait years for university-based research to receive elusive funding.

Resource: Comfy Convalescence

Some recommended products for a comfier Spoonie life. Tips for resting, light sensitivity, support clothes and bras.

I am POTS but what’s ME?

Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition. This is a post which is more about asking for tips from you than offering tips. Please add POTS/ME based comments.

Resource: Quick Tips for Pacing

Quick Tips for Pacing. These may be new ideas to you or simply a reminder.

Review/Resource: Variations on Pacing

Bird in cage

A post discussing different forms of Pacing and the difficulties involved.

Am I PoTS or is it just ME?

Attempts to disentangle #PoTS and #MEcfs: Some observations from my experience of the diagnostic process.

If Seneca Had a Heart Rate Monitor

At the moment because I've got into modern stoicism at the same time as looking into heart rate monitor pacing I'm finding that I'm sort of amalgamating these two very different approaches.

Resource: The Anti-Exercise Fitness Regime

Bird in cage

The basic idea is to avoid hitting your Anaerobic Threshold (AT) or raising your Morning Resting Heart Rate (MRHR) to avoid crashes and relapses. Initially this may mean doing less (it has for me).

Resource: Temperature, Sleep 2

Quick tip for getting to sleep.

Resource: Essential Oils List for ME

pic of valerian

A very brief summary of the reported properties of oils which may be useful for chronic illness.

Resource: Aromatherapy for Spoonies

pic of valerian

I have no expectation of being Cured through aromatherapy. However, I have found that some oils help with some some symptoms. Recipes can also have a synagistic effect and so I've written up a few that I use below. You may also want to read this review and this list of essential oil properties. It isn't free but some of the oils are £1 on ebay and last a long time (use this search to find them). You don't have to use every oil in the recipe. The first 5 oils I'd buy would be: grapefruit, rosemary, basil, clary sage and lavender (≅£7).