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.
The complete MEMap process
1. Configure the App. Before doing anything, watch our video, read the Guide tab on the MEMap App and play around with the App until the three basic screens become familiar. When you are ready, take the Config Journey on this website (which will give you a config pin). Then choose 'Configure App' from the main menu on the MEMap App home screen (Wellness Map screen), and utilise your pin with the 'Web journey pin' option. For a simplistic alternative that involves typing a lot of info into your device, take the in-App quick configuration option buy choosing 'Configure App' from the main menu on the MEMap App home screen, and selecting 'Without web pin'. A confidante, someone already using MEMap, someone more technical than you, or a practitioner can remotely configure MEMap to suit your needs. At MeMap we can work with you to do this. See the Support page for options.
2. Begin to build a picture or map of the wellness you want. What does the future healthy you look and feel like? Which other people seem to have that? What is your clearest memory of feeling really well and content? Are there more recent shoots of recovery that you can nourish? Can regular checking in with your core values and keenest perceptions about life make better use of your wisest self-knowledge? If you configure MEMap the home or Wellness Map screen of the App will offer you a start point for building a quick reference of different kinds of connections to what a good healthy life looks and feels like. Listen to the audio guide 'Building a Wellness Map'. Read 'The importance of a picture of wellness' below.
3. Describe your experience of illness, or the barriers to your health and happiness, in whatever way is meaningful to you. This step moves from wellness to illness, and the things that you need to be different. What in body, mind or lifestyle stands between you and the picture of wellness you are building?
What is your experience of illness - what, for you very personally and uniquely, does it feel like? For example, where in body or mind feels ill or fatigued? Can you break illness down into a few key smaller chunks or symptoms that collectively meaningfully and fairly fully describe (or map) your life with ME? Listen to the Audio Guide 'Identifying changes you want'.
4. Develop strategies or solutions that have worked or are needed.
Each of the 'barriers', 'chunks' or 'symptoms' identified in step 3 needs a response, a 'Reframe'. You may have a strategy or solution that worked in the past or shows promise. If not, even clearly expressing the kind of solution or change you would like is a great first step. A solution that is a distant abstract dream may not be helpful. But one that you can feel in your bones or see in clear terms might help more. Even if you don't immediately know how or where a solution might exist - a definite sense, feeling or vision of what you want is a seed that can grow.
5. Use change tools. Engaging with steps 1, 2, 3 and 4 will hopefully leave you with a map which represents the health and good life you want to get to, and a map of the illness that stands in your way - matched with a reframed map of the best strategies, solutions or aspirations you have so far. Connecting with, developing and sharing these two maps alone should provide the basis for a recovery plan. Step 5 is to use some simple change tools to help strengthen the relationship between you and your maps, and navigate the journey towards recovery. The Reframe Map invites you to check out 'Framing Strategies' which offer bite-sized versions of techniques or approaches which might stimulate your thinking. The Wellness Map and Audio Guides offer a Visualisation technique (plus for those that want it, an intro to the Stop Process) to help shift focus towards wellness. An Audio Guide for relaxation creates the opportunity to connect to, and build, a relaxed place in yourself whenever your mobile device is nearby.
How MEMap will make these 5 steps work for you
Don't worry... all this wil become clear once you play with and use MEMap
Config allows you to opt in to areas reported by ME recoverers to be fruitful for indentifying the nature of the illness they face, the areas where useful strategies could be found and the kinds of wellness to aim for.
A map of the wellness you want creates direction for you to head towards and illuminates the illness that stands in your way or, put slightly differently, illuminates the barriers to your health and happiness
A clearly defined map of your experience of illness or the barriers to your health and happiness clarifies the strategies or solutions that are needed for recovery.
As strategies for recovery are developed, feeding quick reminders about those which prove successful into your map of wellness builds an increasingly complete reference point for all aspects of recovery.
Change tools create a vivid enticing picture of the wellness you want and help navigate the journey from illness towards wellness.
Using MEMap with configuration
MEMap combines 2 sets of wisdom: the opportunity to tap into thinking designed to characterise reported wisdom of ME recoverers and their practitioners, and your own intuitive wisdom about the wellness YOU seek and the barriers which exist to achieving that wellness.
Configuration is a way to cast your mind over the kinds of thinking that seems to have worked for some, and take from it what you wish. During configuration, and throughout the website and App, 'ME Buddy' examples exist to give a fairly rudimentary illustration of how you may use any category or subject area.
The Guide tab, and Audio guides 'Building a Wellness Map' and 'Identifying changes you want' in the MEMap App explain the process of creating a reference point for how the health you want looks and feels - and using that reference point to intuitively and logically break your illness into manageable and meaningful chunks.
It is recommended that you complete the Config Journey and take some time to become familiar with the MEMap App it generates. Then re-read the Guide tab and listen to 'Building a Wellness Map' and 'Identifying changes you want' in the MEMap App. This should sow seeds for useful adjustments to the Bubbles and Frames that configuration generated for you.
The importance of a picture of wellness
Perhaps for any human, the person we can be is limited by what we can feel in our bones. Many PWME we have spoken to describe having lost meaningful connection to what it is like to feel healthy or good. As one said, "for years I made purely intellectual or abstract decisions about my activities. Nothing in my body felt good so there was no way of having any feeling for what would help or what would over-exhaust me". And another, "I was lost in a cycle of faking who I was and everything I did because inside I felt permanently terrible and drained of energy". Some have talked movingly about finding shoots of wellbeing which reconnected them to what health would feel like. These shoots usually seem to shine wonderful light on where even more health can be found and on those things that might have been hindering recovery. MEMap, then, hopes to help users reconnect to a clear picture of the health (and life) they want. And where users do have moments of wellbeing, or have found some seeds or shoots of wellness, the aim is to provide a reminder and a feel for what those seeds and shoots are on the home screen of the MEMap App (aka the Wellness Map), so they can readily be nurtured further.
It is widely recognised that having clear focal points which 'draw you' towards them is a key part of any kind of change that anyone wishes to make. Configuring MEMap is designed to provide a number of these kinds of focal points. A definite time and place when your life and health was absolutely fine is the principal one. An imagined scene from a great day in the great future you wish for, and the look, sound and feel of people who, for you, exhibit great health, are other focal points.
As well as direct reference to good health, the Wellness Map is designed to include any peak wisdoms, core values, life strategies or inspiring reference points that put your life into a perspective that feels very right. Most people have occasional perceptions which wash away stress or negativity - or give the day a boost. Instead of the constant process of forgetting and re-remembering the knowledge your inner coach has about zoning out of stress, asserting yourself, feeling confident, centred and easy etc, MEMap helps bottle it for more continuous use.
On a purely practical level hopefully all this seems helpful. But also at a neuroscientific and psychoneuroimmunological level, making regular connections to these kinds of self-knowledge seems to offer many benefits. The MEMap App Audio Guide, 'Building a Wellness Map' talks about this in more detail. It also gives detailed guidance on building your Wellness Map - though there is no right or wrong way to do that. Ultimately it is a very personal process of capturing the memories, associations, aspirations, values, imagery, strategies and wisdom, which really speaks to you and says... 'healthy, energised, content, optimistic, relaxed, free to live your life the way you want it...'
Variations on the complete MEMap process
Is configuration necessary?
No. If you read the 'Guide' tab, listen to the Audio Guides 'Building a Wellness Map' and 'Identifying changes you want' in the MEMap App, and feel comfortable with a) building a picture of the wellness you seek from scratch, and b) using Frames/Reframes to break up your experience of illness (and the strategies that work or the solutions you seek) into manageable chunks - then configuration may be work that you can do without.
Reading through the MEMap Config Journey may still prove thought provoking and worthwhile.
Is it essential to complete steps 1 to 5 above in order?
No. It is not a matter of completing each step before moving on. Once you have made some progress you can move on and circle back to earlier steps when new perceptions arise. There is a sensible logic for initially engaging with the steps in numerical order, but if, for example, starting by identifying the issues you want to move forward (ie 3 and 4) feels the best option, do that. If you are going to use the Visualisation tool AND the Audio Guide 'Identifying changes you want',
it is recommended to have a go with the visualisation before fully engaging with the audio. If you are going to configure MEMap, it is best to do that first. Once you start using the App it takes some work to stop the configuration process writing over any items you have created.
Simply picking the bits you like
The only usage of MEMap that will work is the one you feel is a meaningful use of your time and energy. We have found that using is often believing with this tool - so do try to give it some time. But where things are not for you - eg the Visualisation or Stop change tools will often feel a bit much for some - give them a miss. Steps 3 and 4 naturally work together (if you want to use them but not step 2, the audio in step 3 may then be superfluous). If step 2 does not interest you, taking the Config Journey on this website, but opting out of the questions on the 'Config completion' page, is recommended.
For an injection of positivity, steps 2 and 5 may work comfortably together. In this case, taking stage 2 of the Config Journey, the 'Config completion' option, but not the rest of the Config Journey, is recommended. If you want a straightforward planning tool for ME with minimum set-up or mind-body stuff, steps 2, 3 and 4 without 1 and 5 might work for you.
You may just want to go with 'Easy MEMap' or using the App as a communication tool (in both cases see below).
At its heart MEMap is a thinking tool. Thinking is a slow process: the invaluable perception we humans have while watching the sunset or sitting on a hillside is often lost and refound many times before it sets more permanently in our conscious. At its simplest MEMap is a designed to capture these wisdoms as they arise - and develop them, not forget them, over time. This - 'Easy MEMap' - can be done by ignoring configuration and not bothering to attempt to build full maps of what your wellness looks like and how your experience of illness feels. Instead simply create Bubbles and Frames to add useful thoughts or perceptions as and when they come along. MEMap only really comprises 3 types of wisdom:-
Issues, problems or chunk sized parts of your illness - the things you feel need to shift to make way for wellness. These are 'Frames'.
Strategies or solutions that might work for the things you need to shift. Or aspirations for where you want these issues or 'chunks' to head. These are Reframes.
The look and feel of the easy, happy wellness you seek - and the inspiring, motivational or plain helpful trigger thoughts, feelings, memories or imagery which have a track record of nourishing that wellness or connecting you to it. These are Bubbles.
Simply play around and get comfortable with the App, watch the video on this website, then read the 'Guide' tab in the MEMap App, and you should be ready for Easy MEMap.
A key goal of MEMap is to improve 'the conversation' about this complex difficult illness. It offers PWME both a shared format to define and share their experience with others, and some common talking points that ME recoverers suggest may be fruitful. The intention is not to try to replace a good supportive chat on the phone or a visit. It is to facilitate very focused dialogues where people compare notes on what, exactly, they experience, and what does or might address anything they face. MEMap is basically 2 maps: a map of the wellness or things we want, and a map intuitively breaking down illness into chunks small enough to find or envisage strategies that may feel doable. By sending all or bits of both maps to others, they may hear our story, offer support, add helpful suggestions or gain benefits themselves from the experience and wisdom we conveyed. MEMap actively challenges any 2 people with ME to communicate and buddy each other to both build 2 maps each which fully 'describe' the wellness they seek and the illness they experience.
To communicate via MEMap, both users should download the Android App from the Google Play store and register for online services on this website. Frames are sent from the Frames Outbox, Bubbles from the Bubbles Outbox (accessible from the top right menus).
You can create items to send in both outboxes. Or copy 'Sender' Frames or 'Inbox' Bubbles sent to you by others into the outboxes, where you can react to, edit and reply to them. Or copy 'Your own' Frames or Bubbles to the outboxes. In the outboxes the normal edit options that exist for Bubbles or Frames include an added 'tag' option where you can add or modify a hashtag subject or question to an item (for example, 'Do you feel this?'). You can post all of your outbox or all of 'Your own' items to another App user by inputting your username and password and their username. When you post items a pin will be generated for the username you sent to. You will need to tell, text, email etc this pin to the recipient.
If your device has an email App installed, there is an alternative option to email items to anyone you wish (emailing yourself is a useful and recommended way of backing up information you have written in Bubbles or Frames that has become valuable to you). Emailed Bubbles and Frames will be set out in the email as written text. We are working on a tool to enable those without MEMap to reply to an email like this by sending Bubbles or Frames directly into the MEMap App. We imagine it is more likely that MEMap users will exchange Frames (as opposed to Bubbles) as they attempt to unpick and share issues and symptoms. When creating a new Frame it is possible for it to be a 'Thoughts Box'. This is an opportunity to write any thoughts and notes to add context to the Frames you are sending.
Download items sent to you by ensuring you are in the Wellness Map if the items are Bubbles, or the Reframe Map if the items are Frames. Select Download from the top right menu. You can either use a pin to download a specified set of items. Or check the box and use the username of a Sender to generate a list of the most recent items they sent you. Follow the instructions given to get Bubbles tagged and into Inbox, or Frames into a named screen dedicated to your Sender.