Thursday, 31 December 2015

Heart Rate Monitoring: Numbers!

Heart rate monitoring, as a means of pacing activities, is without doubt a very useful tool for people with ME.  

At its simplest, it is a means of avoiding activities that elevate heart rate (HR) into the aerobic exercise zone.

Does the word "aerobic" conjure up thoughts of lycra, leg-warmers and some rather Eighties work-out routines? Maybe you think that being so ill, means that there is little risk of you entering the "aerobic exercise zone"? Well think again. All is not what it seems for people with ME.

In this post I am going to explore the various means of calculating optimal HR numbers, and then share a few of my own thoughts on using these calculated numbers in real life.

THE NUMBERS:

Maximum Heart Rate (HRmax)
Exercise recommendations for ME are generally based on limiting HR to a percentage of each individual's HRmax - which is the theoretical maximum rate a healthy individual's heart can work at, before physical damage occurs.

The simplest method of calculating your age-related theoretical maximum is by subtracting your age from 220.  The result is your estimated number of beats per minute (bpm) at HRmax.

220 - [your age] = HRmax                    (for me: 220 - 52 = 168bpm)

Apparently other calculations (1) are now regarded as more accurate, but it seems that this simple calculation still remains the most used.  

 HRmax can then be used to calculate a Personal HR Limit:
There is now good evidence (2) that ME patients cannot ramp up their energy production systems normally. Consequently, people with ME should try to avoid spending time with their HR elevated into the aerobic zone.  It is generally accepted that aerobic exercise is achieved when exercising with a HR of 60% of HRmax or above, and so keeping below this level has been suggested by various ME specialists.

Calculating 60% of HRmax (My Personal HR Limit): 


[Your HRmax] x 0.6 = 60% HRmax          (for me: 168 x 0.6 = 101bpm) 


It is thought that if ME patients can keep their heart rate below this level, that this avoids doing further damage to their already compromised health.  Less ongoing damage, in theory means more opportunities for the body to heal itself.  However the reality of living within this self-imposed limitation is no easy task - more thoughts on that below.

Other recommendations on Limiting HR for ME:

The NICE guidelines for ME (3) suggest using a HR monitor during periods of "exercise", however they are more generous with their upper limit, suggesting 70% of HRmax as the number to remain below.  I wrote a blog post about this, because it seemed to me that doctors are ignoring HR monitoring advice altogether, and that this higher limit is better than no limit at all.

A Two Day CPET Test can be used to make more precise individual HR recommendations.  Unfortunately the test itself is not without risk for ME patients, because it involves two periods on an exercise bike. However the test does show clear differences between ME patients and de-conditioned controls (a possible biomarker?) and can also be useful for proving disability(2).

Whatever number is used, the lifestyle restrictions imposed by this method of pacing are significant.

LIVING WITHIN THE NUMBERS: SOME THOUGHTS.

Using an Alarm: 
I have been wearing a HR monitor daily for over a year now.  At first I used the alarm feature to warn me every time my HR exceeded 100bpm.  Doing so was certainly a useful exercise to help me learn what elevates HR, but ultimately I found it so intensely irritating that I now have it permanently turned off. However, I know others who find it helpful, so I guess it is a personal choice.

Life Adjustments:
I glance at my HR readout every couple of minutes whilst I am active. If it is raised above 100 I then adjust or stop what I am doing until it drops again.  This means most tasks take longer to accomplish because of the rest breaks, but I am convinced that doing so helps me to avoid the worst of the post exertional effects a couple of days later. However I'm not always perfect as chatting raises my HR, and socially I'm not comfortable with breaking off a conversation immediately my HR spikes.  I also can't always control exactly what happens when I'm away from home.

Keeping a Record:
I use an app called Endomondo (4) on my phone to collate data from my HR monitor.  This lets me see how long I spend above 100bpm each day.  This can vary each day from only a few minutes (when things are really good) up to several hours (when I had a urine infection and my HR went bonkers).

Endomondo:
A screen shot from my Endomondo account online taken just now looks like this.  (My labels added)


I have changed the boundaries that Endomondo sets for the various zones so that they fall on multiples of 20bpm. (Therefore the zone names shown are not correct.) I can see here that my HR is averaging a little bit higher than normal, which is hardly surprising as it is the holiday period, but the pattern is not unusual for me.

Obeying Exact Numbers?
So here's a thing. If you look at how my heart rate changes through the day you can see that it spikes up quite quickly, but also that it can drop quickly. For this reason, it may not matter what precise number I use as my upper HR limit, because in truth my heart rate changes so quickly that it would shoot past all those exact numbers anyway.  More important, in my view, is to attempt to control were heart rate settles for any length of time, and to try to keep that low.  I also watch where my average HR for each day falls.

Knowing when to pull back:
Tonight it is New Year's Eve.  I had an invitation to go out, but I'm not going.  I know that were I to be out in company tonight my HR would spike easily, and that it would not drop as quickly as usual either. The decision to stay in was not just based on today's higher than usual HR data, but also on the fact that yesterday was a busier than normal day - meaning today is a day to be ultra cautious no matter how I actually "feel".

"Dangerously Okay!"
This phrase was used by a good friend of mine recently to describe what happens when adrenalin masks our symptoms and tricks us into believing we are more "well" than we really are.  I find that this can sometimes happen to me in the 36 hours after a fun event. In fact, during this day-after period my HR may actually be deceptively low - so even HR is not always an accurate measure of well-being.  For this reason, I always try to ensure I have a full two days quiet time after any slightly more active day. To be sure, to be sure! ;)

On Balance:
Heart rate monitoring is an incredibly useful way of monitoring activities in the moment,and regulating them to cause minimum damage.  However, I think using HR data for pacing is slightly more of an art, than an absolute science. If I were to stick strictly to keeping my HR below 101bpm at all times, I would never leave my bed.  However I know I can spend some short periods each day with my HR above this number and still avoid post exertional effects.  Thus I think the numbers need to be read within the context of each individual's own experience.

Looking forwards:
I admit I'm fascinated by numbers, so over the past year (& more) I've been collating much of my daily data into a large Excel spreadsheet.  Using that data I've created some pretty graphs whilst looking for patterns in the data.... So - Next Year - I hope to share some of those graphs and my musings about what they might mean.

Let's hope 2016 is a big year for medical breakthroughs for ME....  

Happy New Year! 

***

Further Information:
1)Wikipedia on HRmax
2) Workwell paper describing use of 2 Day CPET test for ME (CFS)
3) NICE Guideline for ME:  [CG53]
4) Endomondo (I pay a small monthly premium for the version I use).

Other HR posts on Just ME:
Starting Heart Rate Monitoring for ME Dec 2015
Heart Rate Monitoring & NICE Guideline for ME Nov 2015
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014


Friday, 4 December 2015

Starting Heart Rate Monitoring for ME

 Recent developments in wearable technology for the fitness industry mean that ME patients, like me, can now easily monitor heart rate throughout the day.

Doing so is no magic cure.  However I think heart rate (HR) monitoring really helps me to recognize when I am in danger of doing more than my body can manage.

As Prof VanNess explained when he spoke in N.Ireland, the aerobic respiration pathways are broken in ME patients. So the general aim for us is to avoid all aerobic exercise. He suggested keeping HR below 110 beats per minute (bpm) as a useful starting point.

Put simply, “aerobic exercise” is any activity that raises breathing rate, and causes the heart to beat faster.  It is also the type of exercise that is recommended for the general population in order to optimize their health!

However as many people with ME know even small exertions can take a disproportionate toll on our body systems.  “Exercise”, in the conventional sense, is unhelpful at best and potentially harmful at worst.

So what can we do? On the one hand we want to keep as fit and well as we can, and on the other we want to prevent further harm caused by over-exertion.

Prof VanNess suggested that using a HR monitor would enable us to recognise when an activity was becoming a problem.  He suggested stopping mid-activity if necessary, and only continuing once HR had come back down again.

In practice this is much more difficult than it sounds!

Some monitors, like my Mio Alpha, have an alarm feature that alerts the wearer when HR goes up.  I found this helpful to learn how my body feels when HR is high, but I disliked the intrusion so intensely, that I now rarely turn the alarm on. I prefer to keep an eye on my HR by simply glancing at the read out.

At it’s simplest HR monitoring means watching for the activities that overly raise HR and then either working out how to modify the activity, or taking a decision to avoid it.  There are many little changes that can be made to activities to help keep HR low and experimenting, whilst wearing a monitor, can help you to find these tweaks.

Yet, starting with a monitor can be a bit scary, because suddenly you will now “see” all those high HR figures, that previously you didn’t ever record.

So it is worth taking a bit of time to find out what is “normal” for you.

In my experience I can get some very high HR spikes, but these fall again fairly quickly when I rest. My doctor has reassured me that so long as they fall quickly then I should not be too concerned with the momentary spikes.

More of a concern are activities that cause a sustained raised HR. Sadly for me any activity that involves any sort of excitement causes this drawn-out effect.  I’m guessing it is the effect of adrenalin.

And this is where good resting and relaxation habits can help.  Currently my favourite calming activity is listening to David Attenborough’s autobiography on Audible.  Going somewhere quiet, lying down, and just listening helps me to quiet my mind and body - and my heart rate gradually reduces as a result.

I have lots more to say on my experiences using a HR monitor, but for today I’ll end with just a couple more thoughts:

If you are just starting with a HR monitor, then I suggest that you continue to manage your activities in the manner that you already know works for you.  Don’t make any radical changes.

Treat your HR monitor as a friend to help you make adjustments to what you do, but forgive yourself when you can’t keep HR entirely within the desired parameters.  Being totally honest here - I can’t do it! However it is possible to minimize the duration of those higher HR periods and I think, maybe that is good enough.


Good luck!  


**********

PS I’m happy to answer questions about how I use HR monitoring, however I am not able to look at other people’s data and express an opinion, so please don’t ask me, ask your doctor.  Thank you for understanding. xx

You may also find these posts interesting:

Heart Rate Monitoring Posts:
Heart Rate Monitoring: Numbers Dec 2015
Heart Rate Monitoring & NICE Guideline for ME Nov 2015
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014

Thoughts on "Exercise" and ME:
Graded Exercise Therapy? No Thank You! Sept 2015
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
The Dilemmas of Exercise and M.E.  Dec 2013

General Pacing Posts:
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
Circles of Influence & ME Aug 2015
Do you STOP soon enough? March 2015
POST Emptive Rest June 2015

Useful Links elsewhere: 
Pacing By Numbers by Bruce Campbell
Exercise Testing and Using a Heart Rate Monitor by Jennifer Spotila

Tuesday, 1 December 2015

Index

General Pacing Posts:
Disposable Energy May 2016
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
Circles of Influence & ME Aug 2015
Do you STOP soon enough? March 2015
POST Emptive Rest June 2015

Thoughts on "Exercise" and ME:
Graded Exercise Therapy? No Thank You! Sept 2015
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
The Dilemmas of Exercise and M.E.  Dec 2013

ME Awareness Posts:
ME Mortality June 2016
Some Days - All Days? April 2016
Well Enough to Drink Coffee? May 2015
10 Things ME Patients Need NOW! March 2015
Living Death Disease?? Aug 2014
ME Awareness - Why NOT Exercise? May 2014
ME - A "Controversial" Illness!  Dec 2013

Heart Rate Monitoring Posts:
Heart Rate Monitoring: Numbers Dec 2015
Starting Heart Rate Monitoring for ME Dec 2015
Heart Rate Monitoring & NICE Guideline for ME Nov 2015
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014

Fitbit and Step Counting Posts:
Monitoring ME: Fitbit Sept 2014
Pacing for M.E. - And Using a Fitbit  Dec 2013

Some Grumbles of Mine:
I'm not just tired! March 2016
Work-Sick Divide? March 2016
What is ENOUGH? Aug 2015
Little Rant about "Positive Thinking"! Jan 2015
Cargo Cult Cures April 2015

Thoughts on Research articles:
When "auto-pilot" fails! (Re this paper on Gait Automaticity) Jan 2016

About Me:
About me & "Just ME" March 2016
The Use of Patient Blogs as a Care Resource
(My video presentation at Queens University Belfast) Sept 2015
The Me that Used to Be May 2014
Are You Tired Sally? Dec 2013

Relating to PACE Trial "fear avoidance" paper Jan 2015:
Newry & Mourne Group receive Expert Statement from Dr Jonathan Kerr Feb 2015
Prof. VanNess on recent press reports Jan 2015
Dr William Weir rejects "exercise phobia" in ME! Jan 2015
Tom Kindlon puts PACE in its place! Jan 2015

Some other posts of interest:
A New Hobby Oct 2015
Pacing and Unpredictable Events Sept 2014
Green Spaces and ME July 2015
Thoughts on Travel and ME Mar 2014

ME Awareness Day Campaigns and Other Positive News:
#May12BlogBomb Link List for 2016 May 2016
#May12BlogBomb 2015 Link List May 2015
Greg Crowhurst - Short-listed for Nurse of the Year! March 2015
Black Dress Selfies for Severe ME Aug 2014
May 12 Blog Bomb Link List  May 2014

Karina Hansen:
Karina Hansen - URGENT Please sign this letter to the Danish PM Oct 2015
Karina's Story - A Modern Tale of Horror!! July 2014

Northern Ireland Conferences and Campaigns:
Chasing Competent Care conference report June 2016
Professor Coyne how can we thank you enough? Feb 2016
#InvisibleME Symposium - Belfast March 2015
The Northern Irish Situation for ME & Fibromyalgia March 2015
Update on 'Adopt CCC for ME' petition Jul 2014
Adopt CCC - Initiative by Newry & Mourne ME FMS Support Group Mar 2014
Dr Mark VanNess in Northern Ireland! Feb 2014
Not all of the posts on the blog are listed.
Updated to mid June 2016

Saturday, 14 November 2015

Heart Rate Monitoring & NICE Guideline for ME

NICE guidelines for ME contain a little acknowledged recommendation to keep "exercise" at between 50 - 70% of  maximum heart rate.


At first glance this would seem to suggest that patients can exercise at a brisk walk or gentle jog, because that's what healthy people need to do in order to exercise in this zone.

However the guideline clearly states that heart rate monitors should be used to keep exercise within this target zone.

 

This is important, because people with ME find that small exertions can escalate their heart rate to a much higher level than expected.

Here is some of my own data:


I recently wondered whether any of my ME friends had ever had a heart rate monitor suggested to them - so I asked on FaceBook and from my UK friends responding:

None had ever had a heart rate monitor suggested to them by a health professional.

So perhaps now is the time to insist that any "exercise" patients are advised to take, should only be done with the help of a heart rate monitor.

Perhaps this could this help patients avoid some of the harms reported with Graded Exercise programmes? 

[Edit to add: My own preference would be that patients are NOT ever pushed to exercise at all, but rather encouraged to stay within their limits using pacing techniques. I am aware that NICE pushes for increase. I don't agree. See previous post here.]

Personally:

I have been monitoring my own heart rate for over a year now using a Mio Alpha heart rate monitor and a phone app called Endomondo. It may not provide the full answer to my dilemmas, but I hope at least it helps me to notice when I'm over doing things and so make me slow up appropriately.

I hope others might also find heart rate monitoring a useful technique.

I created the Slide Share below in hope that this information could be useful to patients and medical professionals until such times that the NICE guidelines are updated. 




http://www.slideshare.net/SallyBurch/heart-rate-monitoring-and-nice-guideline-for-me


Post Script: 

Following a comment made below this post, and drawing also on my own experience,  I should mention that there can be times when heart rate appears deceptively low.

In my experience this does not necessarily mean a green light to push a bit more.  Caution is always advisable and only tiny changes to intensity or duration of "exercise" should ever be attempted.


Further Information

Useful Links: 
Pacing By Numbers by Bruce Campbell
Exercise Testing and Using a Heart Rate Monitor by Jennifer Spotila
FaceBook Group ME/CFS - Pacing with a Heart Rate Monitor

Other posts on Just ME:
Starting HR monitoring for ME Dec 2015
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014

NICE Guideline:  [CG53]

More on NICE guidelines for ME:
Margaret Williams August 2008


HEART RATE CALCULATIONS:

Maximum Heart Rate:
220 - (your age in years)

For me:  220 - 52 = 168 bpm  
(bpm = beats per minute) 

Calculating 50% of Maximum Heart rate:  
Max Heart Rate x 0.50
For me 168 x 0.50 = 84 bpm

Calculating 70% of Maximum Heart rate:   
Max Heart Rate x 0.70
For me 168 x 0.70 = 118 bpm

Thus my exercising zone should be between 84 and 118 bpm

Tuesday, 27 October 2015

2nd page for signatures for Karina Hanson Letter

I have added this post simply as an over-flow space to collate the signatures for the letter here:

Karina Hansen - URGENT Please sign this letter to the Danish PM 


Please do not share this link directly, as people can access it from the page above.

Thank you everyone.  There has been an amazing response!

Karina Hansen - URGENT Please sign this letter to the Danish PM

URGENT:  Michael Evison has written this letter to the Danish Prime Minister pleading for the release of Karina Hanson back into the care of her parents.

There is a court case coming up soon, and it is possible that with multiple signatures from around the world, that we could influence the outcome for Karina.

Please add your real name and country to the comments below this post, so that Michael can easily compile the signatories to send to the Danish Prime Minister.

Deadline for signatures: Midnight on Thursday 29th October (GMT)

If you are in the UK, please also state whether you are in England, Scotland, Wales or N.Ireland.

__________________

Dear Prime Minister Lars Lokke Rasmussen,

We the undersigned wish to appeal to you, the leader of the new Liberal Venstre Government of Denmark, to rectify a grave error of judgement that was made by the previous Social Democrat Government in 2012.

I refer to the inhumane forced removal of Karina Hansen from her home and her family. Karina, like many of us, is a severe ME sufferer, in Denmark.

She was diagnosed with ME in 2010. ME was recognised by the World Health Organisation (WHO) as a neurological disease in 1969. Since that time, Karina has had her ME diagnosis stripped away, by the Danish psychiatrist Per Fink, who later refused an offer by the world renowned ME expert, Dr Nigel Speight, to fly to Denmark and perform a second opinion test for ME on Karina.

Per Fink has now been treating Karina with psychiatric treatment for two and half years, with no apparent success. In fact a statement from the Hammell center, said that Karina now has brain damage, which she did not have at the time of her removal from home in 2012.

There is mounting research around the world, to suggesting that psychiatric exercise treatment given to Severe ME patients, harms them irrevocably, perhaps to the point where they cannot recover.

One of the symptoms of Severe ME is inflammation of the spinal cord and brain. So it hardly a surprise that brain damage can be an outcome.

The Hippocratic oath that all good doctors take, says "Do no harm". It would seem that this has not been observed.

In 2011, the Norwegian Director of Health apologised to the Norwegian ME patients, for not believing that they were seriously ill and for their previous irresponsible treatment at the hands of the Norwegian health service. This was repeated by the current Norwegian Prime Minister Erna Solberg in 2015.

Denmark is currently not well regarded, for ME treatment in Europe and probably the modern world, mainly due to the situation surrounding Karina Hansen. Thousands of ME sufferers around the world are following Karina's situation with great concern. For the second year running, they will be sending birthday cards to Karina and cards to her parents. In the hope that she will receive them and realise that so many people care about her.   

The new Danish Liberal Venstre Government, now stand at a crossroads in this situation. They can either continue the treatment of Karina, initiated by the previous Social democrat Government, or they can apologise for what has happened to Karina, as Norway and take measures to rectify the horrendous situation that Karina and her family now find themselves in.

Karina should be released from the psychiatric treatment regime that was initiated by the previous Social Democrat Government and moved (with agreement from her family) to a suitable non psychiatric care home, near to her home and family, where they can visit her whenever Karina is well enough to accept visitors, as is the case with normal hospital patients, until she is well enough to return home to her parents care.

The state guardian should be removed and her parents should be reinstated with their parental responsibilities for their daughter. Karina is still only a young woman with her whole life ahead of her. We appeal to you to please give her reason to hope for a better future.


___________________

Please feel free to share this post widely to gather as many signatories here as possible. (Gathering names from around Facebook and Twitter is time-consuming, so please direct people here to add their names.)

There is also an ongoing event on FaceBook to send cards to Karina for her birthday. It can be viewed here: Cards2karina: Hostage of Denmark - 33 months & 3 birthdays deprived of freedom

Thank you.

Notes:
 If you have several names to add, they can all be listed in a single reply.

You may need to select "anonymous" in the menu on the comments box (if you have no Google ID) - also make sure you hit "Publish" in order to comment.

It seems Blogger is not allowing further comments on this blog post, please follow the link and leave your name here: 2nd page for signatures for Karina Hanson Letter

Edit: Concerned about some direct statements in the original letter, I softened the impact of some statements and Michael has now seen these. No further edits planned.  The essence of the letter remains the same.

Thursday, 22 October 2015

Guest post from Simone: Chronic illness...

Chronic illness...

Successive losses that wear away at the Self. Eroding the familiar "I" slowly, over time, like water on soft stone until, later, little is recognisable. Misshapen, only the careful attention of an archaeologist can piece together the original form. There is no escaping the relentlessness of the grief. It is an invisible grief... there is no funeral, no wake (though occasionally there are flowers). Largely nothing to signify the extent of the decimation of a life that once was. Only rubble. Ego death.

The loss of roles, skills, abilities. Each quietly slips away, unheralded. Try holding on to them, they slip through the fingers. A sense of inevitability... powerless to halt the erosion.

Often there is a new identity, that is unwelcome: disabled, welfare recipient, sick, dependent, unemployed, pitied. These jar... the ego rejects them, they're not "me", not "I". There was a time when the "I" was other things, and maybe there will be a time when a new "I" forms. In this in-between, there are only these labels, not adopted but imposed from outside... these are the new "I". Try them on... they don't fit well. "Not me! Not "I"!" the ego cries.

In a world that idolises the ego, serves its vanity, where status is god, to lose identity is to lose status, and to lose status is to lose identity. Ego death is terrifying, painful, traumatic and invisible to most. The potential for liberation, of finding a new "I", is there; the death and loss of the Self a prerequisite.

Relentless erosion, until there is nothing. Until, perhaps, a new.
*

Thank you to Simone from Australia for this eloquently written guest post.  

Saturday, 10 October 2015

A New Hobby

ME is a life-altering illness, and because of this hobbies that once gave much pleasure often have to be dropped.  However this is not a post about loss, rather it is about a new more ME-friendly hobby that I have found!

Recently I won a Panasonic GX7 camera through a National Trust competition.  The idea was to take a photograph of a sign saying "Thank You Nature" and then share it with the National Trust on social media using the tag #ThankYouNature.

My husband had previously suggested I might enjoy photography, but I had balked a little at the cost of setting up, not sure that I would really take enough photos to justify such expense.

So when this competition came up, I entered (several times actually) and won with a funny little image with wild flowers between my toes!


The GX7 camera I won, ended up being ideal for me as it is so very light and yet has almost as much photographic ability as a full DSLR.  New lenses for it are also much cheaper than for DSLR.

So I bought an extra lens or two and started to take photos of the birds on the feeders here at home. I've also got a bit fascinated by scenery.  Anyway as a new, and less energetic hobby, I find there is much to recommend it.

Here are a few of my favourite shots to date:












 



Still so much to learn, but a great excuse to sit still outside for extended periods of time. :)

PS I've just got started with Flickr - You can view more of my photos here.

Tuesday, 22 September 2015

Graded Exercise Therapy? No Thank You!


I have created a slide series (below)  to give a quick over view of the problem with graded exercise advice for ME patients given in NICE guidelines (UK).

M.E. patients & the problem with NICE advice on exercise from Sally Burch

Update 2016 - This paper  by Mark Vink shows that data from the PACE trial itself, shows that there are no real benefits to either CBT or GET:
The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review

Live links for the slides:

Other posts I've written in relation to exercise and ME:

"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
A few notes on using a HR Monitor for Pacing Feb 2014
The Dilemmas of Exercise and M.E.  Dec 2013


Saturday, 12 September 2015

"The Use of Patient Blogs as a Care Resource"

QUB ePatients Conference 12th September 2015

Today a video of the audio PowerPoint that I've been working on over the summer was shown at the QUB ePatient Conference in Belfast.

My own health was (& is) not sufficient to cope with actually presenting this live, so I was delighted when Dr Steven Wilson  the organiser of the event agreed to me presenting remotely.

I am also hugely indebted to Joan McParland and Martina Marks, my co-Trustees for Hope 4 ME & Fibro Northern Ireland, for attending the event and answering questions after the presentation on my behalf .

This is the presentation:

To watch in full screen, start video then click on the
word YouTube in bottom right corner.

I stayed at home and was delighted to be able to follow the event on Twitter using the tag #QUBept  and there were many ideas and concepts discussed that will require further thought on my part!

Altogether a fascinating event.

I look forward to further discussions online on some of the issues raised.


***********

Links to material shown in my presentation:

Media Articles: 
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" The Telegraph
"Exercise can help with ME, scientists say" BBC

ME Association Links:

Forward-ME Minutes of meeting at House of Lords 25 June 2014
Our CBT, GET and Pacing Survey calls for major changes to therapies offered for ME/CFS | 29 May 2015

NICE Guidelines for ME [Edited to add this link on 16th Sept]
Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children
NICE guidelines [CG53] Published date: August 2007
It is the assumption of "increase" that I find problematical with the GET programmes.

Sites that influenced me:
The World of One Room - Face Book page
Stonebird website
Invest in ME website
Let's Do it for ME (fund-raising for Invest in ME)

Canadian Consensus Criteria for ME (online pdf)

Paper referenced by Prof VanNess during his Feb 2014 visit to N.Ireland
Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome Christopher R. Snell, Staci R. Stevens, Todd E. Davenport and J. Mark Van Ness (2013)

Our Charity webpages:
 Hope 4 ME & Fibro Northern Ireland
Facebook page for Hope 4 ME & Fibro Northern Ireland

Links to Just ME posts mentioned:
Living Death Disease
Well Enough to Drink Coffee
"Play-Up & Lay-Up" not "Boom & Bust"
Circles of Influence & ME

Other related material:
Recent video of Jessica Taylor and the work she does with her charity Share a Star
Link to Greg Crowhurst's book: Severe ME: A Carer's Guide 


14th Sept: Edit to add a link to Greg Crowhurst's review of my video on Stonebird:
This video could save your life !
Thank you Greg.  A review, like this, from you means everything!

Sunday, 30 August 2015

Circles of Influence & ME

Click to enlarge
Part of coping with ME, I think, is about drawing circles around the things we aim to influence.

When I was well, I once attended a staff development session where we were asked to list all the things in the world we'd like to change.

Then we were then told to place each thing either:  inside our "Circle of Realistic Influence" or outside of it.  The take-away message was that we were to forgive ourselves for not tackling those things outside of our personal circles.

Now that I think back on this session, it makes me realise just how much ME sufferers must draw tight circles around their lives - often pushing more and more things outside of that circle of influence.

In fact even looking at what we can cope with on a daily or weekly basis, shows how we need to "Let Go!" of some things that, before illness, we took totally for granted.

I expanded the concept of having a single circle and did this one for me and my ME.

The innermost circle shows the things that are basic essentials for life, and in truth probably represent the sum total that the very severely affected can manage.

The next two rings are more personal, and could change over time depending on current circumstances. The "Less than Daily" circle looks a good list, but doing one thing on the list, is likely to mean that others must be abandoned.  So some items will be very infrequent. I created the graphic a few weeks ago - I might make some changes were I to re-do it today.

Finally, I thought long and hard about what to call the outer circle.  I didn't want to call it "Beyond My Ability" - even though that is really what the stuff there represents.  So I thought "Aspirations" would be much better.

I think perhaps for some-one newly ill with ME an exercise like this might help them to let go of certain things without guilt.  I remember early in my illness deciding that I had to totally let go of what happened to my garden.  I could no longer tend it myself, nor could I ask family to keep it up they way I wanted.  So I let it go.

One day perhaps I will be well enough to spread all my circles out again, so that my garden once more is tended as I would wish.


*******************************

Other thoughts about coping with an energy-restricted life:

Managing Illness through Pacing;
Do you STOP soon enough? March 2015
Pacing and Unpredictable Events Sept 2014
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
Thoughts on Travel and ME Mar 2014
The Dilemmas of Exercise and M.E.  Dec 2013

Saturday, 8 August 2015

What is ENOUGH?

Today is Severe ME remembrance day when we think of those too ill to leave their darkened, and eerily quietened, rooms.

Today once more, patients, families, carers and friends will try to alert the world and the medical establishment to the travesty of the "living dead" - those who are most severely ill and largely forgotten.

Last year I wrote a blog post called "Living Death Disease" to try to highlight this incredibly mis-represented and misunderstood situation.

A quick look on social media today under the tag #SevereME will bring up scores of blogs, videos, tweets, links, and messages. (Please look, like and share as much as you feel able.)

Yet advocates have been campaigning for change for decades.  The history of how some ME patients have been treated by the establishment makes for harrowing reading.

A short quote from MAGICAL MEDICINE:HOW TO MAKE A DISEASE DISAPPEAR (Hooper 2010) illustrates a pervasive attitude:

"In 1992, the Wessely School gave directions that in ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described as merely “a belief”; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as “the undeserving sick”. "

So how can we do ENOUGH to tip the balance in our direction? 

What do we need to do, so that the rest of the world will look on in horror and shout "ENOUGH!" on our behalf?

How can we persuade ordinary doctors, who receive inadequate training on how to cope with ME, to champion our cause?

I don't have ready answers.  

Physically, I may not be up for placard waving or protest marching but I can blog, I can use social media, and I can work with others to push for change in my own area.

I am proud to be a trustee for Hope 4 ME & Fibro Northern Ireland  and I will continue to campaign for change in whatever way I can.

Please join me and others, in highlighting this situation - because surely, by now, we've all HAD ENOUGH!!

It's time for change!


Severe ME must be validated as the devastating physiological illness that it is.  Substantial research funding must be secured to investigate its etiology, and the psychiatric premise for ME treatment must be fully discredited and discarded.

What the medical authorities currently regard as enough, is simply NOT enough!


*****

PS Yesterday a fellow blogger asked me if I was going to publish something today.  I replied that I was in a bit of a dip, and wasn't sure that I would.  Yet last night when I read what he had written, I knew I had to say something!

Please read this piece by Henry Anderson:
A blog about my cousin for Severe M.E Day – 8th August 2015

Edit to add:
Two more powerful stories illustrating exactly why we need change:
Limited Capability: Severe ME Day 2015
Living with Severe ME and Random Things: Severe ME Awareness #SevereME

Wednesday, 29 July 2015

Green spaces for ME

 I keep reading articles about how studies have shown that having access to gardens and other green spaces helps people to cope - and I agree.

Yet, when I read some ME articles, these comments are usually intertwined with our need to remove stress from our lives so that we can recover! That is less easy to agree with.

Take this recent conversation - I was told;

"If you would just take time to appreciate the goodness in your life, your recovery would quickly follow." 

I suspect this lady, was allowing her pre-conceived notions about ME to cloud her impressions of me.  She certainly didn't know much about my life.

Anyway, I'm proud to say, I was very "zen" about this interchange.  I was not up for a debate in that moment, so I took a deep breath and then let it go!

You see I love green spaces and am very appreciative that my personal situation allows me so much access to nature.  Indeed, one of the main reasons I took to using a scooter so early in my illness, was to be able to get outside more.

But neither the "appreciation" nor the "green spaces" are going to cure me of ME!

It's just that being outside is such a nice place to be.


Immersing ourselves in nature allows us to leave some of our struggles behind as we just lie back and watch:

- the wind
- the clouds
- the trees
- the birds
- the bees
- and all the rest of nature

. . . as nature carries on  regardless of us, and our struggles.

Monday, 8 June 2015

POST Emptive Rest

Extra rest prior to an event is often suggested for ME patients.  It seems that this Pre Emptive Rest helps - not because we can really "bank" much energy in advance - but because we can start out with as little energy depletion as possible.  However I think POST-Emptive rest is also vital.  That is rest after an event but before the payback kicks in.

Post Exertional Neuro-immune Exhaustion (PENE*) describes what happens to ME patients after minimally extra exertion.  Most ME patients employ various pacing techniques during an event to lessen these effects.  

Yet occasionally life happens and we end up doing more than we should...

Ironically, after an outing I often find that adrenalin, and other happy hormones persuade me that I'm not really so very ill at all, and I find I'm at risk of "riding the roll" and doing a bit more for a whole 24 hours after an event!

Listening to others talk, and it would seem I'm not the only one.  The temptation to get things done, whilst the going is good is huge!

However this window is a danger time, because for me the worse of the PENE falls 48 hours after the event.  That's when the inflammation response is likely to go for my head, my muscles, my joints, my eyes, my ears..... etc. etc.

And if I've carried on doing things in between the event and the PENE hitting, then surely that is going to make everything so much worse when the time comes??  

This is why we also need rest directly after an event.  Perhaps we should name this rest too.  I suggest we call it:

Post Emptive Rest: This is real rest AFTER the event but before the onset of PENE.  It is central to how I manage my life now!

You see, I have one thing I really don't want to give up doing.  I do agility with my dog Finn, and to do this I take extra rest both before and after the event... (& I also take quite a few other precautions to get my 60 seconds in the ring, but that is another story. ;) ) 

Anyway in my view Post Emptive Rest on the day after a bigger-than-normal day is the most important rest of all, because in my experience doing something extra two days in a row has never ended well.

 **************

Other Thoughts of mine on this:

Well enough to drink coffee? May 2015
Do you STOP soon enough? March 2015
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014

*PENE is also called PEM (Post Exertional Malaise).

Friday, 15 May 2015

Guest Post from Holly - Thanks & Thoughts on "Brave"!


Holly first wrote this as a comment beneath the links for this year's May12BlogBomb.  With her permission I have shared her comment as a guest blog: 

Thank you for putting all of this together! 

Thank you to each person who wrote a blog! 

I shared this on my page today and I wanted to pass it along to all these brave warriors who are participating today!


"Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is"

Those words from the song "brave" make me think of the amazing people battling ME. They show me how big their brave is all the time. This community of people inspires me to have courage and speak up. Many people I am familiar with from their online work: the blogs, social media, and online forums that serve as the gathering place for a community of people unable to physically gather together. Others I have come to know well and am lucky to call them my friend. I wish you could know these people and hear their stories. I just think once that happens there is no way we as a society can not take action in the fight against this serious, debilitating illness. Some severely affected by this illness, bravely and painfully type out one letter at a time slowly over days from their beds to write a few sentences to spread awareness and implore others to support much needed research. Many sacrifice precious energy and time to advocate for others. They write government officials, organize events, maintain blogs, and raise funds. I see kindnesses every day in this community. I have certainly been the recipient of many kindnesses and these kindnesses are from people that are in the midst of the fight of their life. Yet, they take time to encourage one another and speak up for one another. It feels like the bond between soldiers fighting the same enemy. We fight for one another. We truly live out the "no man left behind." I am honored to be allowed to participate in this community.

For those battling this illness: I want to take a moment to thank each person that has touched my life in some way. I am proud of your efforts! I see your struggle. I acknowledge your pain but mostly I see the lovely human being that you are. I see you! Yes, this illness is an overwhelming force in your life. However, you as a person have chosen to be an overwhelming force for good in this community. Thank you!

For our allies: Thank you so much for taking time to learn about the illness. It really does mean the world to us when people take time to try and understand. Please help magnify our voice. We have so much to say but sometimes we need healthy allies to be seen out in the world. Many of us are unable to go to meetings, stage protests, show up in the halls of Congress, run a race, pass out fliers, etc. We have some amazing individuals who have pulled off these feats but we need more! A good start is to share a story you have read, a graphic that hit home, a video that opened your eyes. Help others to see us and to hear us. Help us show the world how big our brave is!

#MEawareness #May12 #May12th #May12BlogBomb

*************

Thank you Holly for this lovely comment. xx

Tuesday, 12 May 2015

Guest post from Therese: Happy ME/CFS/Fibro Awareness Day!

It is ME/CFS awareness day, so I would like to tell you a little bit about my personal journey.
I was healthy, just starting out as a Graphic Designer in my first job after art school, looking forward to an adventurous life including travel, love, design and whatever else I could eke out of life. I was hungry, alive and hopeful. Marriage, kids... not on my agenda at that early stage but I would have loved to have got there in the end.

When I was twenty three I came down with a severe virus. I won't bore you with the details, just tell that I have never recovered from it. It wreaked havoc in my body though they are not sure where; possibly my immune system became disordered or over-reactive; maybe my brain is chemically imbalanced or damaged; could be my gut bacteria is completely shot. I react to almost everything I eat and come across in my environment. They are still not sure of what is happening, just that something is.

It has been a hell of a journey and one I would not wish on anyone. There is still very little help to be had for people with these disorders.You have to find your own way; try many ideas; read books, try diets; philosophies; pacing; exercise therapy(god help us!), pray and try not to slit your wrists. Of course you also often have to battle with the disbelief of doctors, family and friends who haven't got a clue what the hell is going on, as you yourself don't either.

Finally, in the The United States, they are finding markers that prove abnormality in the cells. They are considering changing the name from a Syndrome to a Disease (M.E. =Myalgic Encephamyelitis (Old name but preferred by sufferers/ CFS = Chronic Fatigue Syndrome(current name)/ SEID = Systemic Exertion Intolerance Disease - suggested new name). Hopefully this will start a slow avalanche of belief; trials and eventually treatments for people suffering from this disorder.

I believe I am one of the lucky ones. I have found some things that help; diet, pacing myself, resting a lot in between activities, meditation, spiritual beliefs. I am a creative person so I can meander my way around those things when I am up to it. I try to maintain a positive attitude in the midst of this and focus on what I can do. I grieve for the rest, but all things are not possible in even the most healthy life.

My heart goes out to the ones who have ME/CFS so severely that they are bed bound or house bound. They cannot even wash themselves without terrible repercussions. The worst thing that all of us have to deal with is the lack of understanding and belief we face every day of our lives. These people need and deserve support, belief, help, treatments. Many of us don't look sick and this doesn't help our cause.

The next time you hear of someone with ME/CFS or Fibromyalgia (a similar disorder), or any other unseen disease, please try and put yourself in their shoes for a minute. How would you feel if this was your reality? Let our voices be heard; maybe just a hug would help; maybe allow your disbelief to be challenged; maybe reach out a hand to help if it is wanted or needed and if you are able.
And if you are one of the ones that understand, thank you so very much.

Thank you for listening. Therese

************

#May12BlogBomb List of Links for 2015 

Guest Post from Joan - Open Letter to Irish Minister of Health


Dear Minister Varadkar
In this month of May, which is dedicated to Myalgic Encephalomyelitis (and specifically May 12th which is world M.E. day), I have decided to write to you to make a plea.
My foster son is 15 years old. He has been with me since the age of 4 and is as much 'mine' as if he was born to me. Until the age of 12 he was a happy, fit, outgoing, healthy, sporty young lad who loved life, loved his friends, loved school (except for the homework!) and loved his swimming and sports.
At the age of 12 he was struck down with Epstein Barr, chickenpox and a viral pneumonia - all in the space of a few weeks. He struggled for five weeks trying desperately to be well enough to get back to school and failing miserably every time. He eventually made a recovery of sorts and made it back to school in time to finish off his final year in Primary School. He entered into the summer with the full excitement of any young lad, looking forward to secondary school and becoming 'grown up.' 
After his first couple of weeks in school in Sept 2012 he picked up another virus that was going around the school. He became extremely ill and was in A & E several times. The simple fact is that, since then, he has never recovered. His diagnosis at the time was post viral illness, which over time moved to Chronic Fatigue Syndrome and which eventually became ME. He was diagnosed eventually by a renowned Paediatric ME specialist in the UK - Dr. Nigel Speight. There are NO specialists here in Ireland in this condition and patients and their carers are left trawling through the internet and support forums trying to find something, anything that can help. 
He has a range of very complicated symptoms from his ME. the most obvious of which was a complete bowel shut down. As a result he was hospitalised several times over the first couple of years. Eventually he was trained in how to manage his own bowel evacuations at home. His other symptoms include overall bone and muscle pain, painful muscle spasms, tinnitus, ongoing digestive problems, noise and light sensitivity, temperature dysregulation, disrupted circadian rhythm, chronic and debilitatating inability to create energy, post extertional exhaustion and increase in symptoms, cognitive difficulties, intermittent dyslexia, balance problems, short term memory problems, deteriorating eyesight, etc etc etc. There are almost too many to mention. 
He has never really managed to get back to school, save for an odd day here and there. The last time he was in school was in September 2014.  
My young lad is not just my responsibility. He is the responsibility of the State as he is in foster care and I believe that the State are letting him down by not providing us with the expertise to manage this condition. We, like many, many others, are left to trundle along, doing our own research and trying to get help from an international community. During his 'journey' with doctors and hospitals here, it was actually recommended at one point that he be started in Prozac, despite the fact that he had no signs of depression whatsoever. The reason given to me for this recommendation is that 'there was nothing else they could do but this'.  Imagine! Putting a 12 year old child on Prozac for a condition that has a biological origin! How dangerous and appalling is that? These are the kind of things that are happening to the 12000+ ME patients in Ireland on a daily basis and they are the result of neglect and failure to establish even the barest minimum of one  clinic and one consultant to manage this condition and learn about the latest international research.  
I am attending the 9th annual Invest in M.E. Conference in Westminister, London at the end of this month so that I might keep myself up to date on the most current international bio research on this illness. These are the things carers and patients have to do. We have to chase down the information ourselves. We do this while all the time caring for our loved ones. In my case I have had to reduce my working hours from 39 hours to 11 hours per week over the last three years. Poverty soon bites at your door when you have such a dramatic loss of income. 
I am pleading with you to consider the establishment of a clinic with a properly trained M.E. Consultant in situ. Someone who understands the pathology of this illness and who has a genuine interest in the exciting research emerging from the UK and the USA. Even if this only started at one day per week - it would be somewhere to start. There is expertise out there. Patients and patient organisations can help you in this regard. Both the Irish ME Trust and the Irish ME/Cfs Association have a wealth of expertise in this regard and perhaps you could make contact with them to set up a meeting? I would be happy to help with this.
Finally, as May 12th is International ME Awareness Day, could you and your colleagues please display blue ribbons? The Mansion House will be lit up blue on that day to support those with M.E. You can make the ribbons yourself or contact the Irish ME/CFS Association. 
Best regards
Joan Byrne
Dublin