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.
The labels ME or CFS offer little precision about what any one person actually experiences. MEMap is a means for users to clarify and 'bottle' what, exactly, is happening to them in whatever way speaks to them. And to have a map of their peak wisdom and any strategies that do seem to work permanently at their fingertips - so that their best plans can more easily be woven into the hours of the day. Moving ME forward often seems to need an imaginative leap - tools to attempt this are included for those who want them.
MEMap is a communication tool.
A map shared with others making the same journey (or skilled practitioners or supportive family/friends) is a destination far more likely to be reached. MEMap is designed to make the road to recovery a collaborative, engaging, rewarding experience shared with other PWME. The shared format for mapping ME allows success and ideas to be seamlessly swapped. Where PWME are working with practitioners, opportunities exist for remote interaction, getting a flying start by practitioner and client exchanging rich info before ever meeting, cheaper ongoing support, and for both parties to remain very much on the same page (or map!)
MEMap disseminates 'recovery wisdom'.
With ME hard research data is in short supply, but there ARE discernable anecdotal patterns
about people finding fabulous recovery. MEMap attempts to present an App-shaped context for this anecdotal wisdom. For
obvious reasons medical advice and subjects like drugs, dietary supplements and treatment protocols are avoided.
Instead MEMap moulds different types of wisdom reported to us and others by many ME recoverers and their practitioners
into a format that App users might enjoy scanning to see what it holds for them.
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
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:-
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
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:-
Achieve absolute clarity about how the wellness you want looks and feels.
Different kinds of information is collected about you, your values, your peak wisdoms, the wellness you once had, what wellness means to you now and what any current shoots of recovery or moments of wellbeing actually feel like (including your own photos of inspiring places, times or wellness) . A rich positive multi-sensory picture is drawn - in essence a fairly complete map of where you would like to be.
Achieve absolute clarity about your experience of illness - what exactly is it you face?
MEMap encourages you to break illness down into manageable chunks - offering more 'doable' steps than approaching ME as a single, often overwhelming, thing. Your own description of the key symptoms or issues standing in the way of your wellness is the ideal basis for listening to what any symptom, issue or chunk needs. Which strategies suggest themselves? Collectively these chunks can become a fairly complete map of the illness you experience. They form the basis for capturing, bottling, developing and reminding you about your best strategies for each part of ME.
Use change tools to navigate from illness towards wellness.
With a map of what your wellness can look like, and a map of the illness you currently experience, a journey to be made should start to feel clearer. Hopefully this clarity is of itself valuable. MEMap also offers some audio guides and change management tools which offer a flavour of tools many ME recoverers have used (they are clearly very useful tools way beyond ME). IE: having drawn your maps, try plausible transport options to get from A to B, illness to wellness. The results these change tools may offer you are hard to gauge. Your illness or illness management skills may indeed change for the better, your ability to spot the interventions your symptoms need may improve, you may gain new perceptions or feel differently, you may be motivated to look for deeper person to person input, you may find that these 'plausible transport options' actually take you nowhere. Nevertheless they seem worth a shot: whether you have an airy spiritual soul or prefer a rigorous organisational approach to ME, whether you want to escape difficult negative aspects of illness or prefer to focus on positivity and renewal - the change tools offered by MEMap will adapt to you if you allow them to.
Take a pick and mix journey through some aspects of the wisdom ME recoverers and their practitioners report to be valuable.
Any drugs and supplements used are not covered (the science here with ME is vague and we are not qualified to cover it). Instead MEMap covers wisdom about the the kinds of areas where planning, mapping of recovery and clear, deep, intuitive or creative thinking helped. ME is an extraordinarily broad church, the experience or wisdom of some will contain little meaning for others: each user is invited to opt in where it feels right. This is achieved by taking the Config Journey on this web site (or rather less effectively, by in-App configuration). People often take a very individual path towards recovery, perhaps because ME feels like a very personal experience. A lot of us are thus somewhat reinventing the wheel. The Config Journey is designed to allow you to make a genuinely personal choice between ease of use (grabbing wording and categories MEMap sets out for you), and building up something that uniquely represents and speaks to you (adding to or dispensing with the categories MEMap offers).
Communicate with people about ME in a format or language designed specifically to share the recovery journey with others taking the same journey.
MEMap is also designed to share information with a practitioner or supportive family member/friend: 'this is my experience, this is my ME, this is me'. ME, all illness, is a hard road to travel alone: a 'sounding board' who understands and supports your journey is invaluable. Where others have made progress, their thinking or strategies can be plugged directly into your map as food for thought for you. Hopefully ME recoverers and practitioners will be kind enough to characterise their success in the MEMap format to share it with all. You can exchange all or part of your MEMaps - ME social media, if you like...
Use a clear process if you want one, or utilise MEMap as a far looser planning, communication and change management tool.
The tech is designed to encapsulate, as simply as possible, thinking, theory and observation about how people effectively build change in their lives - whatever that change may happen to be. It was very tempting to simply invite App users to buy into those parts of MEMap that tempted them. In reality people frequently want a definite process not a thesis. So MEMap offers a definite pathway for what we think is 'optimised' use. For example, there is a process to use your 'Wellness Map' to illuminate the nature of the barriers that stand in the way of health and the kinds of resources YOU feel you need. Parts of that pathway may not suit your tastes or energies. The 'Getting started' page on this website describes the pathway, explains the best way to leave bits of it out if desired - and suggests 'Easy MEMap' for those wanting a 'light user' tool or a more playful pleasant experience (Apps are meant for play!) The 'Keep it simple' page outlines the most direct way get going with, and fully utilise, the App.
Allow tech to provide a missing link with ME.
For those who think an App for ME seems ridiculous - a nutcracker for a rock - yes of course you are right. But a closer look suggests a remarkable fit between mobile Apps and ME. Most obviously, Apps have multimedia, organisational, information retrieval capabilities - just like our brains. They are an excellent opportunity to take a multi-faceted approach to ME which utilises the multi-faceted capabilities of our brains. More importantly, unlike the kinds of illnesses where treatment might involve a weekly trip to a hospital, ME is something that happens 'throughout the day'. If at 3 o clock, or maybe 5, we get involved in something stressful, or go out, when a rest was needed/scheduled, the consequences may be telling. Our mobile is often the thing most permanently with us - the perfect medium to buddy us throughout the day. This may involve quite simple reminders of plans we want to keep to, or reminders about the deeper complex perceptions which normally get lost in the busyness or fatigue of the day. Or... neuroscience now tells us that the brain has huge 'plasticity': that's to say, whatever habits we regularly keep will create and strengthen pathways in the brain, conceivably changing what we are and how instinctively we feel. The mobile device which is regularly by our sides is thus an ideal platform for regularly embedding new strategies or approaches. Many PWME have tried to 'stop' stressful or unwanted mindsets, or 'start' connections to ways of being which more genuinely nourish them. They have reported that sometimes the ingredients of what is being stopped, started and how, become vague and drift far from their conscious thoughts. MEMap is designed to help correct this by embedding and growing this valuable knowledge in a mobile device.