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.

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 home page.

MEMap Flavours

For those who find the Config Journey too much work, or who prefer to work from a more explicit model for managing ME recovery, MEMap Flavours is a fledging attempt to find suitable frameworks for different types of approaches to recovery. Be warned though, they are designed for the mindsets it says on the tin - ie designed to narrowly match the name and description given to each Flavour. So any one Flavour will suit only a minority of PWME...

MEMap Flavours gets your App configured with very little typing or effort. The idea is that we characterise common approaches that seem to have been successfully pursued by ME recoverers. If you think any of them seem right for you, instead of taking part one of the Config Journey (Frames config), you use the letter representing your chosen Flavour. When you configure the MEMap App, the starter text of your Frames and Reframes then becomes our attempted characterisation of your Flavour. You adapt this to your own needs (and no doubt delete parts of it that don't suit you). It is written in the first person to save you the effort of converting it into the first person yourself. Obviously we have no idea what ideas and words work for you - but the Flavours concept may prove useful to save your energy or get you thinking. If you don't like the Flavour, you can configure another Flavour by attaching a different letter to your pin. The pin is what you generate by taking part two of the Config Journey: to add a Flavour simply add the appropriate letter to the front of the pin. Eg if your pin is 999, G999 would configure your App with the 'Going for it' Flavour.

  • 'Going or it' - Flavour G  This Flavour is an attempt to answer a question of this kind: "I feel strong enough to be really proactive towards ME, and I am willing to scan my life for any area AT ALL where stress could be minimised, or greater wellness added. If you collected key parts of the different successful approaches reported by ME recoverers into a single 'covering many bases' strategy, what might it look like?" MEMap does not cover supplements, drugs, treatment protocols or biomedical issues - naturally, clinicians who felt qualified and able would more actively add those kinds of elements. But Flavour G sticks to using good planning, clear thinking and creative management to really get to grips with ME recovery. This Flavour does assume that you have successfully established that your health can normally tolerate some base level of activity or exercise. There is NO intention that you exceed that base level of activity: at some points there is a simple recommendation to direct the energy resources you DO already have to maximise what they can offer you.
  • 'My energy levels feel completely flat' - Flavour F  This Flavour is designed for the period most people with ME have experienced, where energy levels are on the floor. Typically here, it is very hard to get any meaningful feel for the path towards finding more strength, even a small spark of zest or some real sense of health. It can be hard to make the effort to actively manage ME when the chances of finding better energy feel so distant. Flavour F aims to provide a framework to help navigate these periods, and offer some belief that they do pass, and that it IS worth continuing to plant the seeds for recovery.
  • Another flavour will be described here
  • Another flavour will be described here