User Guide

The ME/CFS Diary App is designed to help those affected by ME/CFS in several ways:

  • To help you find your Activity Baseline
  • To help you maintain your Activity Baseline
  • To help you increase/decrease your Activity Baseline
  • To help you monitor your symptoms
  • To highlight the importance of switching activity
  • To act as an archive record of activity, exhaustion and symptoms

Activity Baseline

An Activity Baseline is the amount of activity you can perform on a daily basis without any adverse affects. This means you can perform the same amount of tasks on a good day as you can on a bad day, without any additional ME/CFS related symptoms.

To set the Baseline calculator in motion you will be asked to predict what you think your current Baseline is at the start of each diary cycle. You can achieve this by moving the slider to the appropriate level within the Start New Diary menu page.

The Baseline is presented as a percentage. 0% means activity and functioning are severely affected while 100% equates to optimum functioning without any ME/CFS related symptoms or exhaustion..

100% functioning does not equate to the equivalent of a top class athlete it relates to normal functioning. Your functioning before you became unwell with ME/CFS.

Your chosen Baseline will be displayed on the ME Diary Welcome Page. After one week of recording data, the diary will calculate a suggested Baseline. The recommended Baseline will now be displayed on the Welcome Page. The recommended Baseline will change intermittently according to your activity and exhaustion levels (depending on how long you have set the diary).

Remember following a suitable Baseline may prevent you from unhelpful boom and bust patterns and frequent bouts of Post-Exertional Neuroimmune Exhaustion (PENE). PENE is described in more detail later. You may still experience fluctuations within your energy levels, although these should be less severe.

If the recommended Baseline is 30% then maintaining your activity levels at 30% may benefit your recovery. If you have set your own predicted Baseline higher or lower than 30% you may want to reconsider your activity levels and recovery goals.

When you are confident that you have found a working Baseline, maintain this Baseline towards recovery. After you are able to maintain a Baseline without increasing intensity of PENE or any additional adverse affects; you may consider increasing the amount of activity you can perform. This should be done over a considerable length of time. Small increases in activity over long periods are recommended.

The ME Diary is designed to empower an individual affected with ME/CFS. We hope that you learn to identify your Baseline as quickly as possible. This will allow the process of healing to begin. Remember to include rest frequently in your day in a pleasant safe environment.

The Baseline calculation uses activity and exhaustion data to calculate a recommended Activity Baseline. It is also important to relate your current symptoms to your Baseline. Recorded symptom data can be accessed within the Reports and Graphs section.

Monitoring your Activity

The diary allows you to monitor your activity every thirty minutes over a 24hr period, seven days a week. Simply touch a colour representing your chosen activity then touch a time circle. Each circle represents 30 minutes of a 24 hr day.  It’s that simple.

Sleep

Very important to allow for recovery and repair

Rest

May prevent boom and bust patterns in your weekly activity

Low levels of activity

Reading, watching television, talking or listening

Medium levels of activities

Self care, using a computer, making a snack

High levels of activity

Walking, driving, making a meal, social activity, house work

It is important to be consistent when recording your activity. To help facilitate this try to set each daily task as a low, medium or high activity.

Activity levels will not be the same prior to you becoming unwell. For example, driving a car prior to becoming unwell may have been a low activity. Depending on exhaustion and other symptoms this may now be a high activity. For someone severely affected with ME/CFS, getting out of bed may be a high activity.

Everyone will be different. The important aspect in monitoring your daily activity is to be consistent with each category you choose.

Monitoring your Symptoms

Symptoms for those with ME/CFS vary from one individual to another. For this reason the ME Diary have included the most commonly experienced symptoms.

Exhaustion (mandatory)

Post Exertional Neuroimmune Exhaustion (PENE) (mandatory)

Muscle Weakness

Muscle Pain

Joint Pain

Sleep Problems

Mobility Problems

Cognitive Problems

Simply press the button within the Monitored Symptoms Section at the start of each diary cycle and select the ticked box for the symptoms you want to monitor.

IOT recommend you choose only the most prominent symptoms to monitor for each new diary cycle. The reasons for this advice includes charts will become very confusing when many symptoms are added.

Focusing on core symptoms will increase your chances and your medical/health practitioners’ chances of finding suitable treatments. Rather than being overwhelmed by multiple symptoms you can concentrate on two to four symptoms each diary cycle to improve your chances of treatment and recovery.

Exhaustion

Exhaustion is defined as a state of extreme physical or mental tiredness or collapse. Exhaustion is a significant and disabling symptom experienced by those with ME/CFS, which interferes with many aspects of daily life. Exhaustion experienced by those suffering from ME/CFS is often constant and deliberating. This primary symptom will often become worse after activity, viral infection, exasperation of allergies or untreated gut problems. Recorded daily Exhaustion levels are used in conjunction with Activity to calculate a working Baseline.

Post-Exertional Neuroimmune Exhaustion (PENE)

Post-Exertional Neuroimmune Exhaustion (PENE) is not just a severe increase in Exhaustion but an increase in a number of ME/CFS related symptoms. For example an increase flu like symptoms, in joint or muscle pain, difficulty concentrating or other cognitive problems, sleeping many more hours than usual or an increase in insomnia.

PENE may result in swollen and sore lymph glands, a sore throat the inability to tolerate any sense stimulation including light and noise sensitivities; an inability to have a coherent conversation or to follow simple instructions. PENE could be described as a systemic inflammatory response to only the slightest increase in activity. Bearing in mind an increase in activity for a ME/CFS affected individual may include spending a little extra time in front of the computer or simply getting dressed without resting.

PENE is a reaction which defines ME/CFS from other chronically deliberating conditions, which incur severe fatigue/exhaustion as a symptom. It is crucial that those with ME/CFS learn to recognise PENE episodes and reduce the frequency. The ME Diary will assist you to do this by helping you monitor any increases in activity that may cause episodes of PENE. Each individual will be different with regard to the levels of activity which bring on PENE. And onset of PENE will certainly differ for each individual, as one ME/CFS affected individual may have an episode of PENE only hours after increased activity, while another may not be affected until days later.

When an individual finds their Activity Baseline and remains consistently within that set activity amount PENE episodes may become less frequent and less severe. Make use of the Symptom Line Graph to spot episodes of PENE and also relate PENE episodes to any increased activity within the Activity/Exhaustion/PENE line chart. Be mindful that an episode of PENE may result hours or days after increased activity. Use the comments section to comment on any additional symptoms or periods when increased activity was unavoidable. Relate your results when speaking with your GP or Allied Health Professional.

Record your Symptom Levels

To record your symptom levels just move the slider to the appropriate level for that day.

Zero (0) equals No Problems with this symptom and ten (10) equals Severe Problems. You may want to complete or review your symptom scores at the end of the day to record the best average score.

Add Personalised Symptoms

You can also add your own personalised symptoms to the diary. These can be easily incorporated when creating a new diary.

Adding a Personalized symptom is easy to do. When you start a new diary and enter the personalised symptoms section. Press the symptom line button and enter your own personalised symptom. The added symptom should now appear on the list. You can repeat these steps until you are satisfied with your symptom list.

Your added symptoms will appear automatically on the symptom list every time you start a new diary.

Please see suggested symptoms below, taken from the International Consensus Criteria.

Mobility Problems

Pain

Sensitivities

Exhaustion
Post-Exertional Neuroimmune Exhaustion (PENE)
Muscle Weakness
Orthostatic intolerance
Cannot tolerate upright position
Heart Pain
Palpitations
Light-headedness/dizziness
Respiratory Problems

Headaches
Muscle Pain
Joint Pain
Widespread Pain
Radiating Pain

Sensitive to foods
Sensitive to medications
Sensitive to chemicals
Sensitive to odour
Sensitive to light/noise
Sensitive to touch/vibration
Sensitive to taste

Gut Problems

Sleep Problems

Neuro-Immune Problems

Nausea
Abdominal pain
Bloating
Irritable bowel syndrome

Insomnia
Prolonged Sleep
Frequent Awakening
Vivid dreams/nightmares
Un-refreshed Sleep

Exhaustion
Post-Exertional Neuroimmune Exhaustion (PENE)
Flu-like symptoms Large/tender Lymph nodes
Sore throat
Viral infections
Cognitive Problems
Poor Memory
Problems focusing eyes
Thermostatic instability
Intolerance of temperatures

Adding a Comment

So far we have looked at entering data using quantitative methods (expressed in numerical terms). To further help you find and maintain a Baseline we have included qualitative methods of adding data (often relating to the quality of something). This is in the form of a daily comment. It is recommended that you add a comment when you feel there has been a significant reason to do so. For example:

  1. A brief list of important daily activities
  2. A milestone in your recovery (maintaining a Baseline)
  3. Additional symptoms, which are not listed on the diary page
  4. Positive or negative occurrences regarding your treatment or care
  5. Significant life events that affect change in your life

Comments may help you record those points in your recovery (milestones) when you have either learnt a significant recovery factor or helped you identify other reasons relapses can occur.

To add a comment simply press the add comment dialogue box. Comments can be revisited and edited using the edit specific day section.

Commented entries can be accessed within the Reports section. View your comments as friendly advice from your former self.

It is possible to send your entire diary results to an Email address, and this allows you to analyse them in tools such as Microsoft Excel.

Any comments in the diary are included in this email, and are attributed to the date when the comment was added.

Each comment combined with numerical data may aid your overall recovery.

Energy Domains

Energy Domains may be a new concept for you! Do not despair the concept of Energy Domains is straight forward.

Cognitive Energy = Mental energy, concentration, memory, planning

Physical Energy = Physical movement, self care, walking, kitchen tasks

Emotional Energy = Expressive energy, happy, sad, angry, satisfied, frustrated

Social Energy = Collective energy, sharing, expressing, listening, talking

When we wake in the morning we apply certain types of energy to each and every task. For example using a computer would be an example of cognitive energy. Showering may be an example of a physical energy task and making a meal may include a mixture of both physical and cognitive energy. A night out with friends may involve social energy and a difficult situation at work or an amazing first date may be described as emotional energy.

Switching your energy from one type of energy to another may help you maintain a more even spread of your available energy (Energy Potential). As you start to find your Activity Baseline you may benefit from trying to have a more even balance of the selected Energy Domains.

We have only a finite amount of energy to use per day; this applies to all of us whether healthy or unhealthy (80% of our energy usage is used for basic life support).

Energy Domain levels are recorded as a daily percentage. You can apply all four energy domains for each 24hr period, a mixture of two or more or just a single energy domain. All 4 energy domains total 100%. Remember to complete a full 100% for each day but this does not depend upon how active you have been for that day.

Energy Domains are enabled by ticking the Energy Domain Enable Box at the start of each diary cycle. You can also enable Energy Domains while the diary cycle is active. This function is found using the Alter Settings Tab.

Assessing Results

The ME Diary is a visual learning tool. The diary includes six charts and an additional Activity Grid.

Bar Graph (Activity & Exhaustion)

A quick route to visualise any connections between your activity and recorded exhaustion. Progress may become evident when the gap between exhaustion and activity grows less and activity eventually takes the lead on exhaustion.

Line Chart (Symptoms/Exhaustion/PENE)

A good visual guide to spot boom and bust patterns. Sharp erratic highs and lows may indicate boom and bust patterns. Lines that follow one another with a mirror like image may indicate activity pacing. Learn to relate PENE to any increases in activity adding more rest consistently if needed.

Pie Chart (Activity)

The activity Pie Chart is an instant transcription of how you have been spending your energy. Whether sleeping, resting, low, medium or high activity, a balanced chart may indicate a healthy route to recovery

Pie Chart (Symptoms)

The Symptoms Pie Chart gives the user a picture of which symptoms are the most problematic and persistent.

Pie Chart (Energy Domains)

Energy Domains are clearly displayed in this pie chart. A balanced chart may indicate a more even-handed use of your energy potential

Line Chart (Symptoms & Exhaustion)

This line graph highlights Exhaustion and other symptoms you have chosen to record. While many symptoms may be unrelated to the feeling of Exhaustion some correlations will exist. Over time this graph may help you spot these correlations and may point you in the direction of relevant treatment.

Activity Grid

The Activity Grid is a summary view of your activity, rest and sleep. Using this grid you can easily spot patterns of low, medium or high activity, sleep and rest. Use this grid to see patterns of good/poor sleep, adequate/inadequate rest, an even spread of activity or for spotting changes you could adopt (for example include more rest during the day).

Download Reports

You can download each report to your phone/tablet gallery. Just press the download report button and the report chart will be saved within your phone. You can now share this picture with anyone you wish via the media methods you are familiar with.

Email your Results

You can email your results to your own personal email address or to anyone that may benefit you by seeing your results. Result data is not shared with anyone including IOT.

Create Detailed Reports

Three easy Steps to Create a Detailed report from your latest diary cycle.

Step One

Email your current data or archive file to your personal email in-box.

Step Two

Copy and paste the data into a spreadsheet programme such as excel

Step Three

·         Open the excel data tab

·         Make sure column A is selected only

·         Select Text to Columns button

·         Check the Delimited button for the use of commas, press next

·         Select Comma and Tab button

·         Press Finish

Please see example here: Diary Report PDF

A few more minutes…………………

If you would like to add colour to your report then take a few more minutes

·         Select a cell with either Rest, Sleep, Low, Medium or High Activity

·         Ctrl A to Select all

·         Select Conditional Formatting

·         Highlight Cell Rules

·         Text that Contains

·         Use drop down box to select Custom Format

·         Select Fill

·         Choose your colour

·         All cells with the same word will fill with selected colour

·         Repeat as required.

Please see example here: ME Diary Report with Colour

Closing Comments

How long should I use the diary for?

IOT recommend you use the diary in four weekly cycles (monthly). This will allow you to record a sufficient amount of data. The diary archive will also work well when accessed using four weekly cycles (your overall progress can more easily be related to the calendar months).

You can use the diary:

  • To help you establish your Activity Baseline
  • To help you maintain your Baseline
  • To help you safely increase/decrease your Baseline
  • To record data for future reference
  • To show your GP or Healthcare Practitioner

Getting the most from the ME Diary

How long you require this data is entirely up to you. The app is only a learning tool once you feel confident in managing your activity and symptoms you can move forward. You can always reuse the diary if you have a set back.

Other considerations

  • Add or remove symptoms when relevant
  • Learn to read your results
  • Forecast Rest to make sure you are getting enough!
  • Rely on your own judgement to pace – you will become the expert
  • Be patient, as recovery from ME/CFS takes time

Feedback Button

We have included a quick link Feedback Button on the ME Diary Welcome Page. This button will take you to the ME Diary web page, where you can leave comments to be reviewed to improve future versions of the ME Diary.

This service is essential to further develop the ME Diary and make those improvements/changes that you the ME Community would like to include. Subtle or in depth comments are most welcome. Leave your Feedback.

An internet connection will be required to use this service. ME Diary Feedback does not affect User Reviews and these are encouraged to be completed on Google play, Apple iTunes and Amazon.

Disclaimer

The ME Diary does not replace medical advice and is designed for educational and informational purposes only. The diary is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your general medical practitioner or other qualified health care provider with any questions you have regarding a medical condition.