About MEMap

This project originated a few years ago from a series of conversations among people with ME and their family members. Those conversations went something like this...

"...people make fabulous progress or recovery which they have great faith in. Then sometimes that progress gets lost - often because it seems hard to keep the ingredients that drove the improvement in place... ...when we talk to people who are thrilled at the progress they've made, they usually possess a genuine wisdom about why they improved. Despite the very differing stories they tell, similar underlying themes do recur. But, for various reasons, the communication channels for this wisdom to get to others with ME seem fairly poor. And the wider narrative about ME or CFS does not appear to be a clear or strong one (certainly at the average gp surgery)... ...so what kind of tool could allow individuals to bottle the best ingredients for their recovery? And be a format to capture and communicate the recovery wisdom that does seem to exist?..."

Rather too many years down the line, an App that could continually evolve to contain the best map PWME have of what works for them began to seem a sensible solution (especially for those who love their devices, but obviously not for those who struggle with IT, reading and screens). Instead of wisdom, plans and tools for ME being a scattered mass of information, there seemed to be so many advantages to capturing key info in one place - an App - and being able to say 'this is me, this is my ME'. Hence... MEMap.

Contact us at [email protected]

The MEMap take on ME or CFS

At MeMap we have weak belief systems about ME. That's to say: we really don't know exactly what cause or cure is. And we have no attachment to, or vested interest (that we know of) in, any particular approach to ME. Wherever PWME and their practitioners appear to have made progress - great effort: we are extremely keen to establish what reasonable conclusions can be made from this anecdotal evidence. If MEMap appears biased towards clear thinking, change management and mind-body approaches, it is because - though we are keen to take the risk of saying 'something' about ME (see below) - we simply should not recommend going to a gp or health food shop to request this or that drug, supplement or test.

At MEMap we have rather stronger belief sytems about the world of ME. We feel that PWME have been poorly served. Enough people have made sufficient recovery from ME for there to be plenty of data about recovery pathways. There is scarce evidence that the difficult work has been done to crunch that data to identify a) explicit well-judged packages that some on the ME spectrum can routinely benefit from, and b) the kind of research needed to help those on the ME spectrum where recovery is rarer.

There seems to be a void, albeit an understandable one, at the heart of the ME world. On one hand key stakeholders are understandably slow to make recommendations that may not fit any one individual. On the other, practitioners who feel they are achieving success often, understandably, promote fairly definite models of cause or cure - sometimes at the exclusion of other models. In a community where intense debate and argument clearly exists, this shortage of softer, more nuanced conclusions can exclude both patients, and chances for much needed cross-discipline cooperation.

MEMap is intended to occupy a small corner of this void in a way that Goldilocks might. Concluding nothing or little about ME is not an option: people are suffering, years of lives are being lost - neglecting to share the anecdotal ME wisdom which exists is, well, neglectful. But making specific or universal conclusions and adding medicalised models to anecdotal wisdom sits awkwardly with the science about ME (such as it exists) and the diverse experience of people who live with it.

Therefore... ...we are absolutely committed to providing useful, frequently reported anecdotal wisdom about ME in a format that is usable, and in a context that recognises the limitations which exist when anecdotal wisdom needs to stand in for hard science.

This is a companion piece to the piece of the same title on the MEMap explained page.