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MEMap/meMap home

The MEMap Android App is available now. The link for your Android device is: Google play store

MEMap is a patient-led initiative designed for those people with ME or CFS ('PWME') who want to take a positive, proactive or creative approach to the confusing and conflicting information they receive about their illness. Until the admirable campaigns for better biomedical research and services get results, PWME are often left to piece together medical theories about ME themselves. Since this is proving tough for clinicians, surely it is a thankless task for those of us with no training. MEMap proposes that PWME direct their focus to where they DO have genuine expertise - their own 'felt experience' of illness. Developing 'world class' knowledge about what is happening to them puts people with ME in a very promising place: one thing 'ME recoverers' frequently report is a clear sense of how their illness developed and how it went away. MEMap helps users take a forensic, intuitive, creative approach to building their own recovery wisdom - at whatever pace suits them. MEMap is an Android App. Its core components are as follows:-

MEMap is a 'holistic recovery planning' tool.

MEMap is a communication tool.

MEMap disseminates 'recovery wisdom'.

To make MEMap doable for all, MEMap features remote configuration and intervention for users too unwell to manage alone. And, in recognition of the draining process of spending vast sums in search or recovery which those of us with ME commonly experience, it costs £4 (plus £4 for those wanting communication and online functionality).
This website is designed to offer a lot of context about MEMap and how it might fit your approach to ME. For direct 'keep it simple' steps to get on and use the technology, click here.

Some quick health warnings:- This is MEMap 'zero'. Tell us how the next version should be different! The MEMap App or website intends NO recommendation that PWME increase their activity levels - or refrain from seeking and following the advice of fully qualified medical practitioners. The ME community is a diverse one: no sentence written or thought conveyed in this project necessarily says anything about the history or experience of any one individual with ME. We have struggled during the project to reconcile, on one hand, the needs of ME recoverers who felt they had to bypass a lot of negative info about ME to nurture belief that they would recover - and on the other hand, the need of those facing severe difficulties with ME to have the depth of the challenges they face fully recognised and dignified. After long experience of ME we simply believe that both truths do and should coexist. The ME optimists have solid evidence to think they can succeed. And we know PWME who have the most profoundly challenging lives: we will not be contacting them to suggest that an App is likely to greatly change any of that.

The MEMap App is designed to be a visually attractive, engaging tool. Unfortunately the quality of a Youtube film of the App in action hardly indicates that. But hopefully this video offers you a flavour of MEMap:-

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MEMap is grateful for the generous support of:

Relaxation audio was written and produced, and very kindly donated to the project, by Linda Hall. Her understanding of ME and generosity towards those who experience it very much informs her great work. Click the logo for a link to Linda's Support Programme for ME/Chronic Fatigue & Fibromyalgia.

MEMap: tackle ME/CFS from four sides

Cause and cure
Seek wellnessMERemove stressors
Have a plan

Support initiatives to establish cause and cure of ME/CFS. It seems clear that ME/CFS is an illness or syndrome of illnesses which would have hugely better care and cure pathways if more time and money had been spent researching the illness lifecycle. So long as a cure or a clearly identified pathway to recovery is not definitively on offer, approaching ME from the other 3 sides of the ME Quadrangle seems a fruitful approach.

Seek wellness. Establish a very clear, very personal sense of what wellness looks and feels like, to provide a focal point. As a meaningful alternative to 'solving' illness, build and boost wellness as a goal in itself. PWME and their practitioners have often done this with great imagination. Where parts of body or mind need additional wellness, offer them the the kinds of attention or nourishment they seem to need. Ask the simple question, 'What makes me feel ok?' Orientate life towards that kind of thing.

Remove stressors. ME clearly tolerates stress of any kind poorly. Many PWME describe the onset of ME as an in overload of stressors (often including a virus) which proved too much for their health to take. Living with an illness like ME is likely to add further stress. A systematic effort to identify and remove or alleviate, stressors, anything perceived to be draining, or causative factors of any kind, lessens the load on PWME, frees up precious energy, and may bring the core part of the illness into sharper focus. PWME may simply need to positively embrace tuning stress out of their lives in ways that others have no need to. Ask the simple question, 'What drains or burdens me?' Orientate life away from those things.

Have a plan. A heap of wisdom about ME and what works or doesn't work for any individual may achieve little. What seems to count is getting that wisdom (even the pretty basic stuff) into the ins and outs of daily living. Common among many ME recoverers is a strongly proactive approach (which can simply involve being strongly proactive about rest!). The approaches differ but a genuine commitment to sticking to them seems a shared theme. Plans do not need to be dull: some have committed to wonderful uplifting spiritual journeys. ME seems to readily occupy a vacuum. A plan - eg: rest, do something in a balanced easy-on-self-way, rest, do something else in a balanced easy-on-self-way - can leave less empty space for ME to run the day its way. Communication with, and support from, others seems key to sticking to a plan.

The MEMap take on ME or CFS

The graphic above seems to us to represent a reasonable approach to tackling ME. At MEMap we see two pathways to recovery. The first is better research and investment to establish what ME is, and how effective treatment can be offered to PWME. The wait for this seems a long one! The second pathway includes a personal quest to effectively manage symptoms, stressors, energy levels and wellbeing to get the best ingredients for recovery in place. As a tool designed to help you plan this, MEMap encourages you to check your planning against reported wisdom that appears to be helpful for ME. We think that presenting this wisdom in a usable format needs to happen more - even if getting that absolutely right is unlikely. Our emphasis on clear and creative thinking and good planning is in part because it would be ill-advised for us to comment on biomedical issues. However, various hot biomedical research topics on ME MAY hold important clues for you. MEMap is a format for you to integrate these clues into the fuller picture of what does or could work for you. More on the MEMap take on ME in the About page.

So what exactly is MEMap?

Managing ME and finding recovery involves dealing with complex and contradicting information. It often feels like juggling too many balls. A relapse, or simply the mind-emptying fatigue that ME is so good at, can leave the balls all over the floor - and our complex wisdoms, and even our simple planning, in much the same place. MEMap is designed to be a simple engaging tool to capture and develop, in one place, your 'best snapshot so far' of what you are facing and what ways forward may promise most. MEMap is also a format to use that information to drive the changes you want to make. ME is a difficult nut to crack: it is probably necessary to bundle together information of quite different kinds to maximise the chances of cracking it. That is precisely what MEMap does.

What is your actual experience of illness? What are your deepest perceptions about its cause or cure? What precious gold have you collected in terms of effective strategies? Are you using them to the max? How well connected are you to what wellness actually feels like? How can a stronger sense of where you would like to be guide you forwards? What approaches seem to have worked for ME recoverers? Which bits of that wisdom could you be stealing for yourself? Where ME has been controversial (ie in 'brain retraining' methods), how can the good neuroscience about how all humans can achieve change be safely utilised without stigmatising or unproven conclusions about ME? How invaluable could it be to compare notes about all this information with confidantes, other MEMap users or practitioners trained to add input to your MEMap if you need it? How can the course of a day be altered by checking in with some deep relaxation or your usually forgotten peak wisdoms about keeping stress free? The aim of the App and this website is for you to have information at your fingertips which answers these questions in the most useful or affirmative ways.

Hopefully for some of you this will feel like a rewarding exercise. Any tech involves an intial learning curve, but after that Apps are meant to feel engaging (people do after all spend hours with their heads in their phones). At MEMap we have genuinely found the process of bottling and growing the best wisdom we can find in our own Apps to be an exciting (and successful!) journey. We absolutely realise, though, that for others this will feel daunting or impossible (or frankly a ridiculous proposition out of tune with their illness - and we totally accept this). Therefore MEMap is designed for other people to carry the load for you. It can be configured and populated remotely with your preferences and information about you by any friend, family member or practitioner. Naturally they will either need to know you uniquely well or be able to talk you through what you want.

In more precise terms MEMap is designed to help you to:-