Pacing for M.E. - And Using a Fitbit.

PACING:

Many people with ME find that their activity levels cycle through peaks and troughs.  On a good day, we naturally tend to do more than might be sensible.  In my case I often feel quite well at the time, and so I carry on doing the things I really want to do.

However, this is often followed a couple of days later by a "crash", or put another way a worsening of all my symptoms and an inability to function at my current "normal" level. If I've really overdone it, then I'll find that my normal has also become reduced.  So really, I must try to avoid all but the most minor of crashes.

Click on image to see bigger version.

Pacing is a useful technique.  Pacing means attempting to keep to a regular and low amount of daily exertion.  It is not one bit easy to do, especially on the good days, but pacing like this (click on picture above) helps avoid Boom and Bust. This is important, because I've found that every Bust or Crash leaves me less well off than previously.

The sustainable daily amount will vary for each individual, but should be well below the level that might induce a crash.  Frequent rests are recommended, and activities that increase the heart rate should be kept to a minimum.

However, I have found that I'm not very good at judging how much I can do.  When I was more able I used to measure my time outside walking the dogs, but that failed to take into account the fact that I was also moving around inside the house, nor did it account for how fast I walked.  This made it very easy to misjudge how much I was doing in total.

FITBIT:

Last year (after an unsuccessful attempt to pace using a heart rate monitor) I started to use a Fitbit. This useful little gadget records how many daily steps I'm taking, and shows the total as it accumulates throughout the day.  Currently I average about 600 steps daily, which is pretty darn low!

The data from my Fitbit also uploads to the Fitbit website as soon as it comes into range of the dongle on my laptop.  On the website I can also check a few other things such as my “active time” and how well I slept, both of which are useful features.

Active Time is split into three types:
Very active - for me this is always zero!
Fairly active - which I try to keep as low as possible, any walking, at a normal speed, gets caught into this category.
Lightly active - which is a measure of how much I’ve moved around during the day, quite independent of step count.

And Fitbit gives a running step average for the previous 7 days so it is easy to check if activity is creeping up unintentionally.

Fitbit also allows you to be “friends” with others, or to join the dedicated ME (CFS) group, and so to see the step counts of others.  (Unfortunately the messaging system and the forums themselves are less than optimum.)

You can also connect data from other sites to your Fitbit dashboard.  I used My Fitness Pal for a while to log my eating habits, and this links well to Fitbit, showing daily calories consumed versus a measure of calories expended each day.  I found this very useful.

All in all I think the Fitbit is a great tool, indeed I felt a bit naked without it after I put it through the washer in the pocket of my jeans!  From there it valiantly sent many “very active” minutes out to my computer before expiring!

Feel free to ask a question or two here, and maybe give it go!

However even if you don't feel a Fitbit would be useful for you, please take one message away with you from this:

If you have ME with classic Post Exertional Malaise, then in my experience you should avoid overexertion on your good days, because that is a sure way to destroy your whatever well-being you have left.

Best wishes.  S

Other posts I've written about Exercise or Pacing:
The Exercise Catch 22
Why NOT Exercise?
A Few Notes on Using a HR monitor for Pacing
The Dilemmas of Exercise and ME
(Edits July 2014)

And another FitBit post here: Monitoring ME: Fitbit

IOM Contract - my feedback letter

The Institute of Medicine (IOM) has been contracted by the Department of Health and Human Services (HHS) in USA to create a definition for CFS (& ME).  

There is huge concern about this within the patient community. 

A panel has been put together and the IOM has called for feedback on that panel.  Many patients feel that the IOM has no place redefining ME, and have written to explain their views.  

A copy of my letter is given below:

Sally Burch
[My full address]

23rd December 2013

By Email

Dr Carmen Mundaca-Shah

Institute of Medicine ME/CFS Definitional Study

500 Fifth St. NW

Washington, DC 20001

mecfs@iom.edu

RE:

Institute of Medicine ME/CFS Definition Provisional Panelists

Dr. Mundaca-Shah,

      The opportunity to comment on the Provisional Panel is appreciated.

      ME, myalgic enchephalomyelitis, is one of the least socially acceptable illnesses to acquire in today’s world. This is in no short measure due to its association with the name Chronic Fatigue Syndrome (CFS).

At one point in time it might have been useful for researchers to look for similarities between various fatigues of unexplained origins, and to collect them together under the CFS umbrella. That time should now have passed.

I am an ME patient in Northern Ireland, and I am very concerned by what is happening in USA. It seems that ME can be defined by the Canadian Concensus Criteria (CCC) but for some reason, the Department of Health and Human Services (HHS) in USA has decided that this is not sufficient.

I understand that the HHS has contracted the Institute of Medicine (IOM) to redefine the illness CFS and along with it the illness known as ME. They have continued with this despite no less than 50 ME experts, 171 ME advocates, and over 3000 ME patients and supporters calling for this contract to be halted, and for the CCC to be adopted without further ado.

I understand that the feedback facility, I am using to submit this letter, is intended for feedback on the individuals selected for the IOM panel. However, I want it first to go on record that I think the IOM contract should be halted, the panel disbanded, and the CCC immediately adopted as the working definition for ME, and that any further changes to the CCC be made by experts working on the physiology of ME.

The IOM panel itself, appears to represent a broad spectrum of individuals, however it seems that not all are ME experts. Some seem to have a background that would suggest that they might favour a broad and sweeping definition for ME that might include individuals with other vaguely defined fatigues. Indeed there is a worry that some panel members might even favour a psychosomatic approach to this illness.

Therefore I would like to suggest that the IOM panel (if it must operate) should ONLY include individuals who have a clear understanding of the physiology of ME. Most especially, anyone who claims that ME can be helped by increased exercise, should be removed from the panel, because of their lack of understanding of the Post Exertional Malaise (PEM) that so disables ME patients world over.

If it is the intention of the HHS that the IOM panel should look at ALL medically unexplained fatigues lasting longer than six months, then I would urge that ME be removed from the IOM panel’s focus.

Finally I would like to draw your attention to the in depth response sent to you by Justin Reilly.  I have read and fully endorse the points that he has made and in particular would like you to take note of his comments on individual panel members. 

Thank you for taking time to consider my points.

Sincerely

/s/

Sally Burch

Justin Reilly's Letter to IOM

The Dilemmas of Exercise and M.E.

"Exercise" is almost a dirty word for ME patients.  We hear it and immediately become defensive.  There is good reason for this reaction.  Frequently our ME health problems are ascribed to "de-conditioning" and we are offered exercise to help us to recover.

The basic logic behind exercising for better health, is appealing of course.

Many folk in today's modern world, do not take enough exercise and this adversely affects their health. These individuals can end up in doctor's surgeries looking for magic pills to give them more energy.

Indeed I can understand why a doctor's first reaction to a "tired all the time" patient, might be to promote better lifestyle choices, including exercise.

However the treatment for myalgic encephalomyelitis (ME) also appears to be based on this same notion of a deconditioned lifestyle.

The National Institute of Clinical Excellence guidelines suggest that UK National Health Service doctors offer; Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as basic treatments.  Patients are also often offered anti-depressants as a matter of course.

Yet for patients that have the classic ME symptom of Post Exertional Malaise (PEM), exercise is a dangerous thing.  So a doctor who casually recommends all their fatigued patients to "exercise more", risks inadvertently harming ME patients.

The problem for doctors, we are told, is that there is no clearly defined test for ME.  This being so, I cannot understand why doctors aren't advised to take a precautionary approach with ALL their chronically fatigued patients!  Surely there should be some checks and measures in place prior to advising a patient to exercise?

In my own case, the first doctor to take my illness seriously was under the impression that I should take  three short walks a day in order to help my recovery.  I don't blame her for this advice, because it was given with the best of intentions.  The trouble, is with the guidelines our doctors are given!

There is now increasing evidence that exercise can be harmful.  The link below is a recent article highlighting that the advice given by doctors in USA to ME patients is potentially harmful.

INCORRECT GOVERNMENT INFORMATION COULD BE HURTING CHRONIC FATIGUE SYDROME PATIENTS, NEW RESEARCH FINDS

(Note: Doctors don't diagnose ME any more.  We are now given the name Chronic Fatigue Syndrome (CFS) instead, as if somehow we are just a little tired!)

The article linked above, is backed up by the results of the study linked below.  This study shows a means of separating ME patients from deconditioned controls, using a two day cardio-pulmonary exercise test (CPET).

Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome

This is an exciting development, because now there is a clear means to demonstrate that ME patients are not faking illness.  (Yes, it seems some medical professionals considered this a real worry!)

The CPET test, performed over two days, shows that ME patients cannot repeat their scores on the second day, whereas deconditioned controls can.  A single day's test shows no difference between the two groups.

Sadly the two day test is not being taken as seriously as it could be, and guidelines for the treatment of ME have not yet been altered to remove the promotion of exercise as a treatment.  Nor has the 2 day CPET test been adopted as a marker for ME.

I admit to being cautious about an exercise test becoming a marker for ME, because there might be potential for even this level of medically controlled exercise to cause long term harm to a sufferer of ME.  However, considering that many ME  patients do not have their illness validated by their doctors, I think that the 2 day CPET test is a useful starting place for a "Take ME Seriously" case.

In the mean time, I think doctors, world over, should be made aware of the potential harms of exercise to ME patients.

In truth, I think GET should not be suggested for fatigue until ME has been ruled out.  And further, "exercise" or at very least "exertion" should remain a dirty word for ME patients!!


PS  Edited to add a link to Tom Kindlon's excellent report: 
Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
Thank  you Tom for the link in the comment below. Adding it here makes it an active link. ;)

Are you tired Sally?

My brother-in-law is mentally handicapped and this is a question he likes to ask.  It usually happens in the kitchen when I'm cooking.  He'll walk up beside me and give me one of his beguiling smiles and ask, "Are you tired Sally?"

I know he means well.

Yet, even before I got ME, I disliked this question.  Let's face it, if we are tired we don't want to be reminded of the fact, and if we are not tired we don't want to think we look it!

Of course, I recognise that anyone asking me the "tired" question is most likely doing so because they care.  So I am grateful of the sentiment behind the question.  Maybe it would be worse if no-one ever asked?

Yet, I really do not like that question or any version of it.  Here's a few examples of how the "tired" thing can work:

• Out somewhere and my companion says: "I don't want to wear you out, perhaps we should go home now?"
• Leaving a social event early: "Well, I think we'll go now.  Sally can't stay out too late."
• Or when caught napping: "Oh dear! Is this all just too much for you?"

Again, I understand why folk say something.  They do care for me, and I'm grateful for that.  So, mostly I  try to bite my tongue.

But what I'd really like is for my friends to help me forget my illness when I'm out.  I'd much prefer they found some other little white lie for when the tired situation arises.

So dear friends here's what I'd prefer you say:

• Out somewhere, try: "How are you for time? Should we head back now?"
• Leaving company, make up an excuse. Perhaps even take the blame on yourself:  "I'd like to get back home early because <insert vaguely plausible reason here>.  Sally, are you happy to leave soon?"
• And finally if you see me napping somewhere, please just pass no comment! 

As for my brother in law?  Well, I know he'll continue to ask the tired question.  It's just one of the regular conversations that we have.  He asks, and I reply that I'm fine, and then I turn the question back to him.  He chuckles and tells me that he's fine too.  And so the moment moves on.  

To be honest, I'll rarely give an honest answer to the tired question.  Does anyone?

ME - A "Controversial" Illness!

When I tell people that I have ME, I am sometimes told that it is a "controversial" illness - as if I perhaps had a choice in succumbing to it!

The controversy is largely due to the name Chronic Fatigue Syndrome now favoured in both UK and USA, and which many patients (myself included) believe belittles the true nature of ME.

Part of the problem is that doctors do not yet fully understand how ME symptoms are caused - nor is there yet an easy diagnostic biomarker.  This allows the psychiatric lobby to step in and describe the illness as just a fatigue that is all in our minds!!

Many diseases that are now understood, were previously declared by psychiatrists to be the patient's elective illness behaviour. Or put another way, the patient was succumbing to "hysteria" and the illness was all in their mind.  It is not so long ago that MS was described as hysterical paralysis!

In many ways ME patients are still being treated like this because both the UK and USA call our illness Chronic Fatigue Syndrome instead of the full name of myalgic encephalomyelitis, as described by the World Health Organisation.  

Under the NICE guidelines, here in the UK we are offered only Graded Exercise and Cognitive Behaviour Therapy as "treatments". The first is damaging and the second is only useful if it is given to help us cope with being so incredibly ill. Neither treat ME in the sense that neither can help us to recover our previous good health.

The IOM (Institute of Medicine) contract, in the USA, has been set up to re-define ME.  It is likely to make matters much worse. There is little enough funding getting through to researchers keen to find the real biological problems faced by ME sufferers. There is a very real worry that this IOM panel will favour a psychiatric approach to ME and in doing so further frustrate the biomedical study of our illness.  There are many on this IOM panel who support the psychiatric view point of ME as simply a form of chronic fatigue.

However there is light and hope.  Work has been done that shows very real differences between ME patients, and those who are simply fatigued or de-conditioned.  This link describes a Two Day Exercise Test that shows how Post Exertional Malaise is a big problem for sufferers of ME and that this does not show up for deconditioned controls. Indeed this has now been suggested as a biomarker for ME.

Surely this should be evidence enough to stop the psychiatric nonsense that this illness is simply our mistaken beliefs about our state of health? Yet for some reason the importance of this two day testing is being ignored.

The article below describes how Susan Kreutzer, today, led a demonstration to tell the Department of Health and Human Services (USA) that "We've had enough!"

WE'VE HAD ENOUGH!

Getting a demonstration together is difficult when so many ME patients are confined to their homes. and those that manage to "get out" may LOOK normal but their "payback" comes later. (Ask me how I know this!)

So to round off my ramble, I'd just like to say to Susan Kreutzer and her team of helpers:

"THANK YOU!  You are amazing people for taking this stand. Many more of us are with you in spirit if not physically by your side. My signature is up there somewhere on your banner, and it's yelling support for this action! "

Perhaps now is the time that this patient community finally starts to get noticed?

And heard!  

My ME Backstory

I think maybe my whole ME mess can be traced back to one severe virus I got in July 2011. Or maybe it was one of the 4 viral infections that followed.  Whatever started it, a routine operation in March 2012 changed everything.

Prior to ME

I enjoyed a physically active life.  We are lucky to live on a small-holding and keep our own ponies.  I rode most weekends with my daughters.  We also grew a load of our own fruit and vegetables and preserved them by bottling, drying or freezing the produce.  I had a busy teaching job in college and I was also learning how to train my terrier to do agility.  

Now that I have ME

I am unable to ride, or to teach.  The polytunnel stands empty and the garden is overgrown.  I have had to reinvent myself and revisit the whole concept of  "who I am"!

However, I can still make moments to do things that I love.  I use a scooter to walk the dogs for example, and doing this has allowed me to attempt to compete in agility competitions. I also enjoy sewing and making things.  (And have blogs for both of these interests.)  I am still me - just channeled in a different direction.

Explaining ME

Explaining ME is not straight forward.  Sometimes I don't really think I understand my limitations myself!   You see, some days I feel I can do much more than on others.  Yet, DOING that extra stuff, is not a good thing!

Most activities I do, now carry some sort of payback.  If I'm lucky, this just means resting up for a few days to get back to my current normal.  If I am less lucky, then my "normal" gets reduced.  This has happened a few times, so I must now be extra cautious.

However I AM still me, and I don't want the illness ME to be given as the reason that I have to do things differently.  So, if we're out together, let's just pretend that I use a scooter because I love doing so, or that you're dropping me to the door of the cafe so I can grab a table!  And if I have to go home early, just accept whatever transparent excuse I give you, rather than point out that I might be tiring!

This way, I can pretend that I am still myself, and that ME is not me!

And that is my little ramble for today......

Edit to add:  

I wrote about ME and how it affects me, on my sewing blog for ME Awareness Week in May 2013.  You can read that piece here: So How does ME affect me?

And for ME Awareness Day 2014 I wrote another post on my Agility blog: Why do I use Wheels?

Just ME - A Blog for my Ramblings about M.E.

I thought I would set up another blog to take some of my ramblings about this illness M.E. that hit me out of the blue in March 2012.

This blog Just ME is the result.

I have two other blogs:

Sally Sews Something which is a blog about the sewing I've been doing (or attempting) and 

Ability for Agility which blogs about my antics with doing dog agility.

I wrote an earlier piece on ME for ME Awareness day last year, and put it up on my sewing blog:
So how does ME affect me?