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 scign, 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) mthen 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

Monday, 8 August 2016

Who is responsible?

Who takes responsibility when National Health Service guidelines cause medical harm?

It's a serious question.  Where does the buck stop?  


I am asking because, the National Institute of Clinical Excellence (NICE) guidelines for myalgic encephalomyelitis, ME, still recommend two controversial therapies: Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT).

Actually NICE prefixes the name, ME, with "CFS" (chronic fatigue syndrome) - a shocking misnomer, that suggests patients are simply fatigued or tired.  This would appear to be an intentional attempt to belittle the disease.  It certainly doesn't indicate the potential for ME to become so severe that some patients exist in a living limbo of agonising immobility for years and even decades.

Yet General Practice doctors consult NICE guidelines, see the word "exercise" and regularly tell their ME patients to get out and starting exercising.

I too was given this advice at the start of my illness.  "Three short brisk walks a day", I was told.  It didn't work for me, and I doubt it would work for anyone with this debilitating disease.  Why would it?  One of the main problems with the disease is that exertion of any kind exacerbates all symptoms. Indeed, in my own case, trying to follow the advice I was given led only to increasing disability.

Patient groups and charities, are very aware of the problems with NICE guidelines and have often pointed out that both CBT and GET tend to do more harm than good.  The ME Association survey clearly shows that 74% of those doing GET say their symptoms are made worse.

Further, the now notorious PACE Trial which provides the so-called evidence base for GET and CBT, in fact only shows minor improvements for a small percentage of individuals.  Add to this, the fact that the methods used in the PACE trial, have been scientifically questioned, and that the authors are going to great lengths to resist releasing their data, and suddenly the evidence seems dubious.

Yet still patients are being subjected to this "exercise" paradigm.

So why is nothing changing?  Why does NICE cling to these harmful and questionable therapies?

What has happened to the medical maxim "first do no harm"?

And who is ultimately responsible for the harm being caused? 

I don't blame the doctors.  They refer to the guidelines and believe them to be the best medical information available.  They advise as they are advised.

Doctors also read media headlines, and sadly most ME news stories claim that people with ME just need to exercise and think positively in order to recover. It certainly seems like good common sense advice for the life-weary. Yet because ME has no clinically accepted biomarkers, it is easy for doctors to genuinely think the ME patients they see are just run-down. Or, conversely, to think that those who are just run-down might qualify as having the condition Chronic Fatigue Syndrome, which curiously the media always follow with the phrase "also known as ME".

One way and another, it is easy to see how confusion arises.

Yet for those who have the severely disabling, long-term, life-altering, debilitating disease of Myalgic Encephalomyelitis there can be no confusion: these patients know they have something very physically wrong with them. Any small extra thing a person with ME tries to attempt, results in flu-like payback, and potentially a ratcheting downwards of their long term health.  The disease is relentlessly cruel, stealing away the very essence of each sufferer's existence.

And for the most severely ill it seems there is little the NHS can offer.  Charities regularly get calls from concerned patients and their families, because home visits are denied, and trips to health centres or hospitals are too detrimental to the patient's well-being.

So it seems, severe ME patients are largely ignored by health services, and the NICE guidelines have few suggestions for patients reaching this state.  If patients are lucky, they are given the equivalent of palliative care to ease their symptoms, but not much else.

Yet there are many anecdotal stories of Graded Exercise Therapy being the initial trigger that sent mild or moderately ill patients hurtling into the abyss of severe ME.  I cannot understand why these worrying stories, and the reports from the charities are being so blatantly ignored.

I ask again:  Who is responsible?

****

Useful References:

NICE guidelines for CFS/ME: 
http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations

PACE Trial
: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext 

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Tom Kindlon http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf

ME Association: Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015 http://www.meassociation.org.uk/2015/05/23959/

David Tuller's articles on Virology Blog about the PACE Trial problems : Trial by Error: http://www.virology.ws/2015/10/21/trial-by-error-i/ and further articles on Virology Blog here: http://www.virology.ws/mecfs/

Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data: https://valerieeliotsmith.com/tag/pace-trial/

From Dr Mark Vink: The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review  http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php

Other posts on Just ME:

10 Things ME Patients Need NOW! March 2015
ME Awareness - Why NOT Exercise? May 2014
Graded Exercise Therapy? No Thank You! Sept 2015
The Use of Patient Blogs as a Care Resource
(My video presentation at Queens University Belfast) Sept 2015
Prof. VanNess on recent press reports Jan 2015

Thursday, 21 July 2016

Chronic Illness & "determination to recover"

The press love recovery stories where the long time ill - through sheer determination and will power - make themselves well again.  

These stories run with patient comments such as, "I was determined not to let this beat me." or "It was a very difficult journey, but I triumphed in the end."  The statements themselves are likely true, but the press will often imply that the tenacity of the patient was the major key to recovery.

So what about all the people that remain chronically, and often severely, ill?  Are they simply not determined enough to elicit their own recoveries?

Of course I understand the need for journalists to make the subject of their stories heroic, and therefore remarkable, but there must be other ways of doing this than implying that strength of character and determination alone are sufficient to overcome serious illness?

Actually this line of thinking is not just insulting to the patients who remain ill, but also to the many doctors and researchers involved in bringing effective treatments to patients.  Often the fact that a new drug, or change in treatment, coincided with the turning point in the patient's attitude is down played, and the reader is left supposing that any illness can be over come with good mental fortitude.

The message is subtle and repetitive.  It is also incredibly damaging.

Those who live with intractable chronic illnesses are often regaled with these popular recovery messages by friends and family.  Well meaning folk get convinced that recovery would be just around the corner if only the sufferer would just "think more positively" and "believe that recovery was possible"!

Worse however, is the way this concept affects attitudes wherever a chronically ill person goes!

The cynical "if only you'd try harder" attitude now seems to be the official line for benefits assessments.  The ongoing problems with Employment Support Allowance (ESA) and Personal Independence Payments (PIP) assessments being particularly problematical.

And here the media has influence again.

This time by vilifying patients by "catching them out" doing something they should not be capable of doing according to the benefits they receive.  In these articles journalists can be especially cruel, often using a photo captured in a single moment as their evidence, ignoring the fact that one single moment may not represent the real truth.

Gradually public opinion of the long-term ill and disabled changes.  The chronically ill are now labelled as either heros, or layabouts.  

Media heroes have their praises sung high.  In these stories the heroic individuals either: use their strength of will to recover from their condition; or they have a visible disability, manage to achieve something outstanding, and are described as an "inspiration to all".

Unfortunately, those who remain long term ill without much hope of recovery, and especially those who don't have immediately obvious disabilities, don't get hero treatment in the media.  Sadly it is then assumed they must fall into the category of "layabout".

This dichotomy might not be as a direct consequence of all those media spun recovery stories, but they do have influence.

Recovery stories where the patient is the hero, might appear to be applauding the character of the now smiling recovered individual, but I can't help thinking that the flip side of these stories - the implication that anyone could recover if their character was simply stronger - is unacceptable.

I'd love to see mainstream media stories focus more on the treatments themselves, and on how lives can be changed by them, than on the personal attributes and positive thinking of an individual.

Journalists - if you are reading this please consider that these stories, written with the best of intentions, are actually contributing to a bigger narrative - one that puts blame on all the chronically ill folk that don't recover.  This can also lead to less public sympathy and greater difficulty in finding funding for proper research into medical treatments.

Many of us are determined to recover.  That determination is of course fantastic. It gives us strength  to see through difficult treatments, or to campaign for change. And I've no doubt some positive thinking can help with coping with a restricted lifestyle.  However, please, let's be realistic about the place of "determination" in effective healing.

Thank you.