The Team at ME Diary are here to support you with any questions you may have when downloading or using the ME/CFS Diary Smart Phone Software Application.
Unfortunately the Team cannot support individuals with specific health questions regarding any medical conditions; including individual advice on Pacing Activity.
The ME Association offer support on a wide range of issues related to ME/CFS.
Follow this link: ME Connect
There are several good resources already available online regarding Pacing Activity and ME/CFS.
Action for M.E – Pacing for People with ME
Audio Guide – CFIDSselfhelp
Detailed Recovery Story from Bruce Campbell, Ph.D
Frequently Asked Questions (FAQs) – Ask a Question
1. What are the most important results of the diary when presenting to others?
Answer: The main areas of the ME/CFS Diary to consider when presenting your results to others are your recorded exhaustion levels and activity levels.
Exhaustion will determine how much activity you can do, so it is important to listen to your body and this may be reflected in your results. A quick look at the exhaustion and activity line chart or the bar chart will give you and anyone else an idea of how your exhaustion affects your activity and vice-versa.
When looking at the activity and exhaustion line chart boom and bust patterns will be represented as sharp highs and subsequent lows. Suitably paced activity will have less high and low points and reflect a mirror image between the exhaustion line and the activity line.
Your symptoms are also important and selecting specific ones to monitor for set periods of time will help you and a Health Professional/GP to find solutions. For example pain can be managed in many different ways including pacing activity, meditation, nutrition, detoxification, stress reduction, medication and body posture.
2. How can I use the information in my diary to help complete forms?
Answer: Use your results to aid completion of paper/web based forms. The diary archive can be used to aid your descriptions when completing health, benefit or insurance forms. By reviewing your results you have access to a succinct log of your daily functioning. Forms often involve the respondent describing Activities of Daily Living (ADL) for example bathing, preparing a meal and getting dressed or cleaning the home. Descriptions of ADL are often used to determine an individual’s level of functionality.
By reviewing your ME/CFS Diary results you may be able to give a more accurate description of how you cope with disability on a day to day basis. Those coping with chronic illness often get used to low levels of functioning. Long term disability can then be looked upon as normal functioning for that individual and the disability is normalised.
To prevent normalisation of poor functioning review the ME/CFS diary’s archive data. High exhaustion, low activity and recurrent symptoms will undoubtedly affect daily activity and overall functioning. Make sure you give an honest appraisal using your average accumulated performance of activity and not solely relying on a specific day or a normalised level of disability.
The most effective way to communicate your difficulties is to break day to day activities into descriptive narratives. From the moment you wake, descriptions of sleep, getting out of bed, washing, dressing and eating will be very relevant when completing social and legal forms.
3. I have lived with this condition for many years. Can this App benefit me?
Answer: As long as the user remains consistent when inputting data the diary can be used as a clinical (scientific) tool. The diary will reflect exactly what happens in the event of an increase or decrease in activity. In view of this a person can safely test whether they can increase their activity while monitoring any adverse affects.
You may think this is common sense, to increase your activity and find out whether you feel OK or worse. However, an increase in activity is best done over a long period at very small increments.
The ME/CFS Diary will help achieve this. It can give the user a confident approach to increasing activity while monitoring exhaustion and other symptom levels. You will also be able to archive any recorded data for your future reference.
4. How do you calculate the daily activity score? Would the maximum score be 10?
Answer: The daily activity score is an average taken from the activity recorded over a 24hr period. Each activity sleep, rest, low, medium and high are weighted with a number and this is used to calculate the score.
To achieve a maximum score of 10 a person would have to score high activity all day discounting their sleep time for example 7 hours sleep, High activity 17 hours. (Average sleep is taken at the start of each diary cycle).
An average score of 2 or 3 would reflect sleep, rest and low activity. And a score of 5 or 6 would reflect a balance of activities including, rest, low, medium and high activity.
The most important aspect about recording activity when using the ME Diary is consistency. Making sure you maintain the same categories you have chosen for a given activity. For example driving = high, talking = low, getting dressed = medium. Each individual will be different regarding their activity levels.
When explaining to others (family, friend, GP or Consultant) let them know that a high activity for you is ……………. In this way they should understand your level of functioning pretty quickly.
When using the charts look at the Activity & Exhaustion Bar Chart for your average daily activity. You may soon realise that you are less likely to boom and bust if you restrict your activity to a certain level (for example 5). Some days it will be impossible to stick to this, although on average it should be achievable. Increase activity very gradually taking small steps over long periods.
5. I cannot add personalised symptoms on my phone!
Answer: Adding personalised symptoms is very important when dealing with ME/CFS. Every suffer will need to incorporate their own symptoms depending upon where they are within their recovery.
You can also add your own personalised symptoms to the diary. These can be easily incorporated in the Monitored Symptoms Section.
Adding Personalized symptoms should be the same for all phones and tablets. When you start a new diary and enter the symptoms section by pressing Edit. You have the choice to deselect those symptoms you do not want to monitor, except Exhaustion and PENE, which are mandatory.
Now press the phone menu button and press Add. Enter the personalised symptom into the dialogue box. Press OK. The added symptom should now appear on the list. You can repeat these steps until you are satisfied with the symptom list.
To finish press the phone menu button and then Apply. Your added symptoms will appear automatically on the symptom list every time you start a new diary.
Please see suggested symptoms, taken from the International Consensus Criteria.
6. How does the Baseline work?
The app works as a tool which will hopefully help educate the learner towards finding a suitable activity Baseline. A Baseline that goes some way to preventing boom and bust patterns. It may be that when a person first becomes unwell with ME/CFS that their Baseline is very low, 10-20%, is not uncommon.
At the start of each diary cycle it is very important to be as accurate as possible when predicting your Baseline . Although this can be changed during a diary cycle in Alter Settings.
If a person predicts 70% then this will affect the calculated score by pushing the score up. You can change your predicted calculation up or down within the Alter setting tab to see how each 10% increment will affect your current calculated score.
During each diary cycle the baseline will change if there are high and low fluctuations in activity. However, the baseline will not change on an hourly basis, as daily info is required for the calculation to be accurate. Try to stick to the predicted Baseline once you have found one that suits.
When moving forward do so in small increments over long periods of time. Say 10% over six weeks. Although do not push for gain it will not work with this illness. Patience is paramount when dealing with ME/CFS do not fight it the usual way of pushing on and on.
The Baseline calculation works using activity and exhaustion data so it is important to be consistent when inputting these aspects. Setting levels for groups of activities and sticking to these levels is very important, as is remaining constant with recording how much exhaustion you feel from one day to the next. The calculation also takes into account your average sleep hours. This is taken at the start of each diary cycle.
The goal for many people with ME/CFS is to carry out the same amount of activity on a bad day as on a good day. This will mean that on a good day you restrict activity to a level that will not incur a crash several days or 24 hrs. later.
Please see recent article here: Pacing & PENE
You can check activity levels on a daily basis using the Bar Chart. This is a useful function to gather info on how much one can do each day without causing an activity crash or flare in PENE symptoms.
Other considerations need to be taken into account for frequent crashes. ME/CFS is poorly researched at present. However, there are many abnormalities found in the immune system. This means someone with a diagnosis may find they are prone to viruses and other infections, without the usual symptoms, for example a running nose or chesty cough.
A common cold may cause a tremendous amount of exhaustion compared to a normal individual. However, there may be no external signs that the ME/CFS affected individual has a cold. Thus a crash may also be caused by unseen viruses not just over exertion.
Please see one of our articles for more info on monitoring symptoms: Symptoms Room 101
We hope the above dialogue goes some way to help you learn how best to Pace activity and find a Baseline for your current recovery levels. Pacing is not easy it goes against our culture of push until we achieve, in fact successful management of ME/CFS is quite the opposite.
Please follow this link for more info on the ME Diary Baseline: Monitoring Activity
7. Please can you guide me through how to create a report from my emailed data?
Please click on the images to enlarge
Step One: Please email the data you want to use and then copy the data. Please copy all data within the email
Step Two: Open Excel and Paste the copied data into Column one (1) A. Right click on column 1 A and paste.
Step Three: Select the data tab on the top menu. Then select Text to Columns.
Step Four: Select Delimited and press Next. Then also highlight Comma in the Delimiter Box. Now press finish.
You will now have a coherent table created from your data. You can alter the length of the columns by moving the border in between with your cursor. As below.
You can now save your report for your own archive or send as you wish.