Friday, 17 February 2017

GET out!

GET = Graded Exercise Therapy.  

This is a "therapy" that the NHS still suggests will help people with ME.

The premise is almost plausible and runs something like this (my words):

Exercise is good for everybody, so no matter how ill you are it is always good to encourage you to move about more.

The thinking also suggests that: 


People who have been ill for a very long time start to reap secondary benefits from being ill and therefore need to be persuaded to leave behind their sickness role.


Is that so?

When I was at my lowest, I adjusted everything I did downwards in order to make my life as easy as possible. Indeed having learned about the effects of exertion on ME symptoms first hand, I was continually cautious about doing stuff that might cause me to further relapse.

Yet, even knowing the risks of exertion, I was still vulnerable to the "Use it or loose it" message, that is so popular these days.  Occasionally, I even considered that, I might be over-doing this resting thing.  I thought perhaps all I really needed to do, was summon a bit more motivation and get going .  .  .

I promise you THAT never ended well!

The truth is I always wanted to do more.  The fact that I withdrew from loved ones, and refused almost all social activities, was one of the toughest things I've ever had to do.  Yet, it had to be done if I wanted to prevent further decline.

So the limits of my physical body were ever present and ever frustrating, and gradually over time my mind started to build its plans within those limits.  It's a form of adjustment and acceptance.  Sadly, every further slip downwards included a whole new cycle of frustration and adjustment.  Being ill is like that.

Yet, psychiatrists think of these genuine lifestyle adjustments, as the patient adopting a sickness role.  


Well yeah! When you're are sick it is actually important to adjust your lifestyle to cope.  And certainly a newly sick person's role in society has to change.  Those with long term ill-health are not well enough to fulfil the role they assumed when well.  For me, the adjustment to adopting a more dependent role, was not one I took lightly.  

However I didn't ever "choose" this sickness role.  Certainly it became part of my life, but only because it was forced upon me.

So back to Graded Exercise Therapy:  

The bio-psycho-social premise under which GET is applied suggests that people with ME are actually no longer physically ill.  The premise concedes that the illness may have started with a viral trigger, but after that, it suggests that sufferers simply maintain their role as an ill person!  

With this logic it is easy to suggest that people with ME have just allowed themselves to become de-conditioned.  They don't use the word "lazy", but in reality that is how people with ME are painted.  Exercise is then the obvious "cure".

I have a big problem with this concept, because it suggests that ill people would maintain their restricted life patterns even after they become well again.  

Do they? Or more personally, did I?

I can answer this with more certainty now, because in late 2015 I started on a drug* that changed my illness, and I became able to do considerably more than before.  Of course, I was "de-conditioned" - physical inactivity does that to muscles - so it took some time for me work up to my new physical threshold.

Did I need a GET therapist to persuade me to take up that additional capacity?  


No. I did not!

 As the severity of my symptoms lessened I spontaneously took up the extra ability that my improved health offered. Over time, I carefully let go of many of the layers of protection I had built around my earlier fragile health and I re-adjusted to my new reality. 

This just happened.  I didn't need any therapist to persuade me that I needed to do more, nor to push me to increase my activity!  Joyfully, and with great delight to those around me, I was able to pick up parts of my life that I'd been forced to abandon.  

How could I ever have questioned my own judgement on my physical limits?  

Sadly it seems that society puts incredible pressure on each of us to be "well", and I now recognise that I was not entirely immune to applying that societal judgement to myself.  Society seems to assume that illness is black or white.  The greyness of long-term chronic incapacity is not well accepted. Public sympathy runs out, and there is a pressure to get well again.

Graded Exercise Therapy is part of that societal pressure.
 Combined with Cognitive Behaviour Therapy, these two NHS "treatments", effectively tell ME sufferers that they are not really ill, and that it is time they chose to get better!  

So this is what I can't understand.  Why do researchers of the bio-psycho-social school ignore patients who tell them that Graded Exercise Therapy is causing harm?  Why do psychiatrists continue to push versions of this therapy in their research and in their many highly publicised media-spun stories?

And most pertinent of all, WHY do these researchers ever get funded to test their therapies in children?  

ME children and adults are constantly being told that these therapies "work", and when they don't no questions are asked of the therapy itself - only the person who failed to make themselves well gets scape-goated!

It is time GET was stopped. 
Please support the #StopGET petitions so that we can keep pressurising those in power to get rid of GET!  

GET out!
************

Two #StopGET petitions: Both petitions are linked on this #MEAction page. 

PETITIONS: SUSPEND ALL TRIALS OF GRADED EXERCISE THERAPY IN CHILDREN AND ADULTS WITH ME/CFS

#StopGET also has a new FaceBook page. Please check it out.
https://www.facebook.com/stopGET/



As I mentioned above I have tried a drug, I'm not yet sharing more detail. I can say,  I am happy to be doing substantially better than I was, however this is not "recovery".  I have a new limit, that is still very real.  I can't exercise through that new limit, any more I could the old one.  Nonetheless, I am very grateful that the tight grip that ME had on me, has been partially released.  I am still ill. I still need to protect my health by imposing limits on my lifestyle, and those limits are still frustrating, despite my delight at now having a greater energy budget. Let's hope that soon there will be many more treatment options for everyone, and that GET rapidly becomes a thing of the dark and distant past. 

Saturday, 31 December 2016

Hydro-ease - My First Float

Earlier this year I booked "a float" with the lovely Vivian of Hydro-ease.  



The idea is that you take an hour (or more) to float in a warm bath of Epsom salts.  The water is kept at an even body temperature, and because of the high salt content you really do float.  The feeling is incredibly relaxing, and wonderfully indulgent.

Before I took the plunge, Vivian enthusiastically explained the whole system to me, and outlined some of the benefits of the weightless sensation, and the deep relaxation that results.  She explained that the experience is almost womb-like, and to get as close to that experience as possible, it is quite acceptable to wear nothing!  I laughed, and showed her the new swimsuit I'd bought online!

There are two float units at Hydro-ease. The one I used was lit with a gentle pink light. The private changing area has a light controlled by a movement sensor, so it goes out once you start floating. Inside the float tank you have the option of either relaxing in the soft low light inside, or you can opt to float in complete darkness.


After stepping into the tank, you close the doors to keep the heat in.  Inside there is a light switch, an emergency button which will call Vivian, and also a fresh water sprayer in case you get the salt water in your eyes.

I lay back in complete darkness.  

The first few seconds felt a bit weird.  There I was finally floating - in the dark - with just myself for company, and the full knowledge that I'd be here - alone like this - for another hour.

So I stretched my arms out to feel for the sides of the tank. I found if I lay star-fish-like in the middle of the tank that I was small enough to not touch the edges, but also that I could float a little to one side and use my finger tips to bounce my floating body gently back and forth.  I did this for a while enjoying the gentle watery sounds and sensations.

Soon my mind started to wander.  I found that although my thoughts touched on many ideas, I was becoming too relaxed to dwell on any one thought for long.  I'd touch on a thought, or a concern, in my head, but then feel content enough to just leave it there.

I experimented with a few more floating positions - pencil shaped with my arms by my sides - curled up in a foetal position - tall with my arms above my head . . . but in the end I just relaxed into a neutrally comfortable sun-bathing type of position and let my mind empty.

Time drifts, and when I paused once to wonder how long I'd been floating for, I realised I had absolutely no idea, and also that it didn't matter.

Eventually a gentle sound alerted me to the fact my time was up.  I suspect by then I'd actually fallen asleep, or if not asleep was certainly in a deeply relaxed state.

I took a few deep breaths and allowed myself to wake slowly.  Vivian had told me that there was a generous time for coming round, and I was glad of that.

Vivian also recognises that after such an experience, that we don't just want to dash straight back out into the real world - so after showering and dressing I spent some time relaxing with a cup of herbal tea in her snug resting room. Ahhhhhh......


Afterwards I chatted to Vivian about her work and realised that Hydro-ease is very new venture, being just a year old.  Hydro-ease is also the first, and to date only, floatation centre in Northern Ireland and on top of the floating, Vivian also offers counselling and other therapies.


So was my session worth the cost?  

I have to say YES!  A resounding YES in fact, because I left with a totally refreshed and re-rejuvenated feeling.  Sadly however it did not change my symptoms of ME, and as a therapy it would only suit those well enough to travel, shower and change at the venue. (I would not have been well enough to try this last year.)  Yet as part of a holistic approach to wellness and self-care, I would still highly recommend it. 

I really must get myself over there for another session soon. 


And for those who were wondering about whether I went for the full womb-like foetal experience? Well, let's just say I didn't take the tags off my new swimsuit! xx

*****

You can find out more about Hydro-ease here:
 FaceBook page: https://www.facebook.com/hydroease/
Website: http://www.hydro-ease.co.uk/

Note: I am in no way linked to Hydro-ease and have received no payment or benefit of any kind for writing this post. 

Thursday, 8 December 2016

Guest Post by Simone: Far too many stories like this!

Thanks to Simone for this guest post, which was inspired by the recent blog post by Rosa Rainbows:
"How me and my M.E became worse"

Simone writes:


There are far too many stories like this. People with ME/CFS are being told by many health professionals that their symptoms are just in their head and that, to get well, they need to exercise. The problem is that research is increasingly finding that on a physiological level, people with ME/CFS can be damaged by exercise. Our cells don't make ATP (energy) properly so, when it's used up by exercise, our system collapses. Many people have been made worse by either pushing their bodies to keep going with their lives or by exercising (or both).

I did graded exercise therapy two years ago (at the suggestion of my GP). I was walking for 2 minutes twice a week (I would go to the street corner and back). It would take me 45 minutes to recover from that walk, and then I'd be wiped for the rest of the day. Logic suggests that, over time, my body would gain fitness and I would be able to increase my walking duration and feel better from the walks. Instead, the opposite happened. At the end of 3 months, I still couldn't walk more than 3 minutes, and it was taking me longer and longer to recover. I wasn't feeling better, I was feeling worse. During that time, I saw a specialist who told me to increase my walking to 15 minutes a day, three times a week. I just stared at her, when she suggested it, wondering how I would do that. She must have seen the puzzlement on my face, so she (un)helpfully suggested I break it down into 5 minute chunks, and do them across the day.

Then I started reading the research into exercise with ME/CFS. Things like abnormal ATP production, lactate levels, gene expression, changes in blood metabolites following exercise. Abnormal VO2 Max test results are such a reliable indicator of ME/CFS that a 2-day cardiopulmonary exercise test (CPET) was proposed as a diagnostic test for ME/CFS, except that the test is dangerous for us in that it can take months for people to recover from (the risks are so high that they won't do the test on someone like me). Because of the risk of harm, the test isn't recommended as a diagnostic tool.

After reading the research, instead of following the advice of the doctor to increase my walks, I stopped walking... and I started to improve a little. I wasn't cured, but I wasn't getting worse anymore. (Unfortunately, months later, I got an infection and then went backwards for 6 months, but that's another story!).

At a recent international ME/CFS conference which world leading researchers attended, provocation studies (in which exercise is used in a carefully controlled way to exacerbate symptoms, and measure physiological correlates) were a key feature. These studies are like giving sugar to a bunch of diabetics, in order to understand the process of diabetes and find ways to test for and measure it. This is how exercise (& exertion generally) is being viewed by ME/CFS researchers now, like sugar to diabetics.

It is becoming increasingly acknowledged, within the research community, that ME/CFS is a hypometabolic state. Our bodies have shut down metabolism (energy production). Many think that this shut down has a protective function (to protect us from heart failure - one well known doctor has noted for 20 years that we look, in many ways, like people with functional heart failure, but that something prevents us from crossing that event horizon - from some sort immune process or something else (still many unknowns)).

Despite this, the prevailing view within the medical profession (most of whom do not keep up with the research) is still that this condition is simply caused by activity avoidance, and that people need to be encouraged to exercise to recover. So, despite the researchers viewing exercise for people with ME/CFS as sugar is to diabetics, doctors all over the world are recommending it to their patients. When their patients say that they feel worse, the doctors tell them that it's in their head, that it's a normal part of regaining fitness, and to keep going. But it isn't. It's dangerous.

Please, if you know someone with this illness, never encourage them to exercise, or to push through. If they have been misdiagnosed with ME/CFS (which frequently happens) and instead have some form of idiopathic fatigue, they may respond to exercise. But if they have ME/CFS, there is a very strong chance that they won't respond well, and that they will instead be damaged by it.

Tuesday, 13 September 2016

Petitions: Changing the world one signature at a time.

So what makes a petition massive? And how can petitions for causes like ME be promoted, so that they too gather massive attention?

One petition that received rapid popular support was the one asking for Jeremy Clarkson to be re-instated as the producer of Top Gear.  It didn't actually succeed, but apparently in just ten days it collected over a million signatures.  I guess being a huge celebrity, and a controversial one at that, can really help.

Other viral petitions have children or pets, tugging at our heart strings. They often challenge some nonsensical bureaucratic decision that offends our sense of justice. So we sign, because we all want the world to be made right.

Yet a petition, that highlights only one individual case, doesn't necessarily challenge the root cause of the issue.  The specific case may get resolved but the problem issue might remain.

It's a tricky call for petition writers. Focusing on one individual case, might elicit greater public sympathy, but focusing on the root problem - the one that changes the system for the better - doesn't always grab as much attention.

So what does all this mean for petitions about ME?

If we want petitions to move beyond ME circles then maybe the lessons from the examples above could be used to help us. Here's what I suggest:

  • If you share a petition online, add your own short comment because people respond better to individual stories.
  • If you happen to know any celebrities (or even just some-one with a huge media following) then encourage them to share your post too.
  • When you share a petition consider making your comment public, so that even people you don't know can hear your story.
  • Share that important petition more than once, because most of us don't sign the first time we see a petition.
  • Think about places beyond ME circles, where people might sign if you asked them.
Escalate the Impact!

It might seem that each petition we sign makes little impact on its own, but I think globally our message is starting to get louder.  ME advocates world over are adding their voices to the ME cause.

Soon I suspect we will create the perfect storm.  A storm that will change the whole paradigm of how ME is regarded.

The #MEAction petition of last year calling for the Lancet to review and retract the PACE Trial collected over 12,000 signatures.  It has been referenced in many subsequent letters and articles. The petition was even mentioned in the recent tribunal report that ordered Queen Mary University of London to release the PACE Trial data.

So could we be on the cusp of huge change?

Every action we take now builds on the achievements of earlier advocates, and  adds greater strength to the actions of future advocates.  ME patients can't march the streets, but we can sign petitions. We can share campaigns. We can each make a noise, each in our own way.

The #MillionsMissing demonstrations on 27th September have the potential to have a huge impact. Rows of empty shoes representing lives lost to ME will create a very dramatic image.

Right now there is massive potential for creating momentum to change how people with ME are treated, and every one of us who simply signs a petition is helping.

Your voice matters.
Your signature on a petition matters.

We matter.  

Let's let the world know it!

*********

Petitions worth signing:

The Opposing MEGA Petition:
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Two #StopGET petitions:
Both petitions are linked on this #MEAction page.  At the moment Graded Exercise Therapy is being used on children in the MAGENTA trial.  This must stop:

PETITIONS: SUSPEND ALL TRIALS OF GRADED EXERCISE THERAPY IN CHILDREN AND ADULTS WITH ME/CFS

Ongoing Dutch Petition:
ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment (MUPS = Medically Unexplained Physical Symptoms)

Please also consider endorsing Alem Mathees for a WEGO Health Award for his substantial work on questioning the PACE trial, and for successfully challenging the PACE authors to release their data.  You can give him a vote for an award at this link:
https://awards.wegohealth.com/nominees/12435 

Friday, 9 September 2016

PACE data: QMUL disclosure under FOI

So Queen Mary University of London is to release the disputed data from the PACE trial to Alem Matthees an ME patient who requested the data under the Freedom of Information Act.

http://www.qmul.ac.uk/media/news/items/smd/181216.html

And whilst the international ME community will no doubt be celebrating (I admit I have a some what inane grin on my face just now) it is sobering to think of how far reaching the recommendations for Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) have permeated the knowledge base of our health services.

If (when) the reanalysis of this data shows that these therapies are without merit, there will still be a huge amount of work required to remove GET in particular from the "go to" solutions of doctors, physios and other health care professionals.

However for now, I celebrate.

The real work will no doubt follow.

(Sorry for such a short post, but I couldn't let something like this go by without making a quick comment. :) )

PS Nearly forgot to say Thank You Thank You Thank You Alem!  xx