Little Rant about "Positive Thinking"!

All this positive thinking malarkey is well and good in it's place.

The spin-off however means that no-one can have a moment's melancholy without some-one feeling the need to put them back on track with a nice positive statement..

In my opinion, what all the positive proponents didn't predict was that this "positivity" is, in fact, a way of shutting down empathy.

No longer are friends supposed to put a hand on your arm and give you a moment's indulgence by saying.... "That's bloody rough! Is there anything I can do to help?"

Instead they feel duty bound to ensure you are left with a nice uplifting positive statement. They think they are doing the right thing with this... but as happened for a friend, it stopped the conversation in its tracks....

'Ah, just you  wait until the summer comes, you'll feel much better then.'

I've used this tactic myself when wanting to move away from discussing my health. I say something like, "Ah well better weather's coming, that should help!" .... And guess what it works! The conversation on my health is over!

So I now watch out for these "positive" statements, and recognise them for what they are... a way of boxing up problems and moving away from them in an apparently socially acceptable manner!

I guess most of us can't cope with too much reality at one time.

PS I wrote this on a Facebook group in response to a friend who found herself confronted with positive rebuttals when trying to express some of the difficulties with being ill.

Tom Kindlon puts PACE in its place!

Irish advocate Tom Kindlon has looked closely at the PACE related papers published to date.

He says he finds it difficult to comprehend the glaring errors in PACE methodology and interpretation that remain largely unchallenged.  Also, he questions the fact that many of the outcomes in the published protocol have never been published or released.  

Consequently Tom has made it a personal crusade to ensure these faults are not swept to one side.

In a Rapid Response letter to the BMJ published today, Tom made some astute observations - indeed the title of the letter itself tells much:  

The letter can be read in full here:

Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial

And it is worth reading, because Tom is not afraid to explain where PACE becomes unreliable.  For example:

"A PACE Trial manual itself says "the essence of CBT is helping the participant to change their interpretation of symptoms": this could lead to altered or biased fatigue scores, one of the two primary outcome measures."

Nor was he shy to mention where some of the PACE trial funding originated: The UK Department of Work and Pensions!

Tom goes on to decry the woefully small improvements observed in the six minute walking test, and to point out that the original model for the study said there was no reason participants should not return to full functioning!

The PACE treatments obviously failed on that account, because as Tom notes after treatment the "distance walked remained comparable to people with many serious conditions, and considerably worse than the distance walked by healthy elderly adults".

Hardly "recovery"!

Tom's final conclusion puts PACE firmly in its place as he says:

"Probably the main contribution of the PACE Trial has been to add to a growing body of evidence that while CBT and GET for CFS have resulted in some changes on subjective measures, they haven't lead to improvements on objective measures."

Like Tom, I too am mystified by the blinkered attitude towards the conclusions of the PACE trial papers.  However I would like to commend Tom on the substantial work he has done over the years pointing out the errors and holding researchers to account when their interpretations are suspect.

Indeed Tom's whole life has been dramatically affected by ME, as his bio below demonstrates:


Tom Kindlon Bio:

Tom Kindlon is an M.E. patient and activist from Ireland. He has had M.E. since he was 16. Initially mildly ill, he blames becoming severely and chronically ill with M.E. on a late diagnosis and following advice to exercise. He had completed two years of Mathematics in Trinity College, Dublin when his health deteriorated. Initially he took a year out but his health never recovered.

He has now been severely affected 20.5 years and has spent most of his energy in the last 19 years on M.E. matters. He has helped run the Irish ME/CFS Association during that period.

For the last decade or so, he has been following the published literature on ME and CFS. Noticing that a lot of questionable material was not been challenged, he started writing to medical journals. He has had 17 letters published in various journals including the Lancet and the BMJ, along with 100 or so e-letters.

He also had a paper published in 2011, "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" 

Here are some of his links:
Twitter
Pinterest 
Facebook account on M.E
Google+
Tumblr
PubMed Commons (for most of his e-letters)
ResearchGate (details on all his publications)


Further Information:

Tom's letter today is a Rapid Response to the BMJ Research News  coverage of the Lancet paper: "Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial". 

Some of the recent media reports surrounding this issue can be seen here.

A few more quotes from Tom's rapid response to the BMJ:

Dr William Weir rejects "exercise phobia" in ME!

Dr. William Weir has also slammed media coverage of "exercise phobia" in ME.

Below is a copy of his statement as sent to Joan McParland of Newry & Mourne ME Fibromyalgia Support Group.

This adds to the already powerful letter of support from Prof. VanNess.


Rational understanding of the symptoms of ME/CFS.

The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted. Most recently “exercise phobia” has been proposed as part of the problem although a study of which I was a co-author in 2005 explicitly disproved this proposition. This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition. As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even by their own studies, and which has been undermined by the published biomedical evidence.

The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Prof. Mark VanNess’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.

As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Prof. VanNess’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.


Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.


WRCW

Dr W.Weir FRCP is an NHS Consultant Physician with long experience in M.E. He was a member of the Chief Medical Officer's Working Group in M.E. in 2002 and is the Medical Advisor to Newry & Mourne ME Fibromyalgia Support Group.

This issue has raised a global outcry, so watch this space as more letters will follow from other professionals in the field.

Prof. VanNess on recent press reports

Recent media headlines would have us believe that "fear of exercise" hinders our treatment.  The papers have each taken slightly different but equally damning headlines:

"Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - Study" The Guardian
"Chronic fatigue syndrome sufferers 'can benefit from exercise'" The Independent
"Exercise can help with ME, scientists say" BBC
"Sufferers of chronic fatigue syndrome ‘can benefit from exercise’" The Irish Independent
"Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition" Mail Online
"ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" The Telegraph

What is written behind the headlines is no better.  Patients were understandably outraged!  

The Newry and Mourne ME Fibromyalgia Support Group have spent much time and effort trying to ensure that medical professionals understand the real physiological problems that ME patients have with aerobic exercise, and less than a year ago Prof. Mark VanNess eloquently explained these problems to a packed house in Stormont, Belfast. (More detail here)

Joan McParland (founder and co-ordinator of the Newry and Mourne Group) therefore wrote to Prof. VanNess to ask for his response to the these press reports.

The group are delighted that Professor Mark VanNess has agreed that we can share his response.  We certainly hope it will help clear up any misunderstanding about exercise for ME patients.  His letter is quoted below:


"Dear Joan,

I was saddened to see the press releases regarding the ME/CFS studies from Kings College London. It seems to me they’ve once again missed important nuances of the disease. Nearly all ME/CFS sufferers would either avoid or drop out of any experiment that employed exercise as a treatment because they know it exacerbates symptoms. The remaining subjects would either be very high functioning or consist of fatigued individuals that were incorrectly diagnosed as ME/CFS. Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS. 

Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial. The therapeutic interventions we use are meant to improve quality of life for ME/CFS patients. These interventions focus primarily on strengthening muscles and improving range of motion; activities that get energy from normally functioning anaerobic metabolic mechanisms rather than impaired aerobic energy pathways. We even provide tools like heart rate monitors to help patients avoid significant aerobic exertion. 

Fear of exercise is an understandable response in ME/CFS. For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case. Our exercise physiologists carefully avoid aerobic exercise (which worsens the pathologies) and focus activity programs that utilize intact metabolic pathways with strength training and recumbent stretching (that help alleviate symptoms). These exercise recommendations are consistent with our understanding of ME/CFS pathology.

We would all hope that ME/CFS was viewed with attention given to immunological, metabolic, cardiovascular and neuroendocrinological dysfunction that has been demonstrated with previous research.

Good luck to you and your organization as you help us all accurately portray this illness.

Sincerely,

J. Mark VanNess, Ph.D.
Professor; Departments of Health and Exercise Science and Bioengineering
University of the Pacific
Stockton, California, USA"


From Workwell Foundation

"Professor Mark VanNess received his doctorate in neuroscience from Florida State University in 1997 and did post-doctoral work in the department of pharmacology at the University of Texas Health Science Center at San Antonio. He teaches classes at the University of the Pacific in the College of the Pacific and College of Engineering in the areas of exercise science, nutrition and biology. He began working on CFS in 1999. His main research interest is on the role of the autonomic nervous system in immune dysfunction. He has a particular interest in the mechanisms that produce post-exertional malaise in women with CFS, especially as they contribute to physical and cognitive dysfunction."


Further information:

SUPPORTING STATEMENTS NOW RELEASED
From Dr William Weir FRCP  
From Dr Jonathan Kerr

Also from Judy Mikovits: 

These latest press reports are based on information from the PACE trial that has been widely discredited in ME circles, not least because the patients studied were selected only for generalised fatigue and therefore the majority would not fulfill ME descriptors.
A response from Invest in ME to the reporting by the BBC
Dr Malcom Hooper's response to the original PACE trial.

Link to the paper in the Lancet, on which the current media reports are based: "Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial"

BMJ "Tackling fears about exercise is important for ME treatment, analysis indicates"
Rapid Responses page on BMJ regarding this work here.

Interestingly one of the co-authors of the latest paper came to an entirely different conclusion in 2005: "Is the chronic fatigue syndrome an exercise phobia? A case control study." Where the conclusion reached was: "The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia."

Video of Professor VanNess speaking in Bristol last year.  He travelled to Bristol after the events in N.Ireland and this is essentially the same talk as he gave in Belfast.

And my own analogy: 

Click to enlarge

PS - Two comments below from Penny Swift included here so links to her articles will work:

"Our online report on the study can be seen at http://theargusreport.com/mecfs-research-uk-slams-lancet-psychiatry-report-advocating-exercise-for-chronic-fatigue-syndrome-sufferers/ Comments on the article are welcome. Let's spread the word."

"I have written another article and have credited your blog and the learned prof. http://theargusreport.com/us-neuroscientist-says-exercise-is-a-noxious-stimulus-that-worsens-symptoms-of-mecfs/ "

PPS - My apologies for earlier referring to Professor VanNess as Dr VanNess.  Correction now made. 

2015 - Year of Hope for ME?

I'm feeling optimistic for ME as 2015 begins.

Much seems to be changing in the world of ME, and I feel that 2014 was a year in which the ME community really started to get noticed.

Here are just a few of the things that hit my radar:

January 2014:

IOM panel objections: The ME community launched renewed objections to the USA National Institute of Health's initiative to redefine ME.   The first meeting of the commissioned Institute of Medicine (IOM) Panel convened in early January.  I objected by letter, as did many others.  Some ME folk also used up valuable energy to speak in person: Jeannette Burmister's objection here.

February 2014: 

Dr Mark VanNess spoke to medics and health professionals in Stormont, Belfast.  The Newry and Mourne ME Fibromyalgia Support Group, who organised the event also arranged a silent protest outside Stormont and asked that the Canadian Consensus Guidelines (known as the CCC) be adopted for ME in Northern Ireland.  Report here. A video of Dr VanNess's Bristol talk a few days later is available here.

March 2014: 

Adopt CCC for ME in N.Ireland campaign: Inspired by the letters from ME experts and Patient Advocates, and also by the online petition to the USA NIH, the Newry & Mourne Group launched their own Adopt CCC for ME in N.Ireland petition in an effort to persuade the Local Assembly at Stormont to take this decisive and forward thinking step.

May 2014:

#May12BlogBomb An amazing outpouring of blog posts were released for May 12th Awareness Day, and those that used the #May12BlogBomb hashtag were collated here.

Light Up the Night for ME This endeavour started as a friendly challenge to light up as many building as possible, and ended up with - "a total of 54 pictures submitted & 36 public buildings and landmarks and 18 homes from: Australia, Canada, Germany, Japan, Northern Ireland, Puerto Rica, USA and UK." Photos here.

June 2014:

Ireland End to End Cycle for Invest in ME. My husband and a group of his friends raised just over £2700 with a non stop relay cycle the length of Ireland.  I am aware there were many other fundraisers, and am continually amazed at the amount that can be raised by dedicated patients and their families. More on Tim's cycle here, and on other Invest in ME initiatives here.

July 2014:

The Adopt CCC for ME in Northern Ireland petition was presented to the Local Assembly, at Stormont, by MLA Dominic Bradley. Update here.

August 2014:

Severe ME Awareness Day. A huge flurry of awareness activities took place.  Greg Crowhurst's Stop the ME Cover-Up campaign produced some haunting images from patients, whilst The Black Dress Selfie images provided a more light-hearted approach.   Many folk were once again drawn to write about Severe ME- my post is here.

November 2014:

Karina Hansen's Birthday: The plight of Severe ME patients taken into psychiatric care continues to be of grave concern. A small gesture of solidarity led ME patients from around the world to send Birthday cards to Karina Hansen: she is currently under enforced psychiatric "treatment"  in Denmark.  A Facebook page here gives updates.  My post here. 

December 2014:

Jeannette Burmeister continues to tackle the NIH over the IOM. Having sought documents under Freedom of Information, she then had to take legal action to have those documents released, and to have her legal fees paid.  Despite winning this action, the NIH have neither paid nor released the material requested.  Jeannette is herself substantially ill with ME, and both the stress, and the financing, of this action have been at her own personal cost.  The ME community world wide should be thankful she is on our side.  Please take time to read more of her blog here.


2014 - Newry and Mourne ME Fibromyalgia Support Group continues to push for change in N.Ireland.  Led by the dynamic Joan McParland, this group has achieved much in 2014:

• Charitable status has now been achieved. (I am both a committee member and a trustee for the group.)
• The motion to Adopt CCC for ME in Northern Ireland will be debated in our Local Assembly in the New Year (date to be confirmed).
• The Patient Client Council has taken up the case of ME patients and the lack of specialist ME services and has promised to liaise with the Health and Social Care Board in N.Ireland for change. Funding for an awareness campaign in 2015 has also been promised.
• Joan's Freedom of Information request regarding a local Condition Management Programme advertised for ME, has resulted in TWO responses - the second contradicting the first! No doubt there will be further developments. 
•  Facebook page here & website here

*

I know this is just tiny glimpse at a very busy ME world.

There are big and bold campaigners out there who will hopefully make radical changes to the way ME is perceived and treated.

However there are also a plethora of ordinary individuals who run groups, write blogs, give friendly advice, and continually reach out to the newly afflicted.  It never ceases to amaze me the amount of care we all receive through social media... and Facebook in particular!

I believe if each of us continues to create our own small ripples, in our uniquely personal ways, and that if we back the campaigns of those brave enough to tackle the system, that the tide must eventually turn in our direction.

I wonder will 2015 be the year that ME finally gets rid of the psychiatric / psycho-social stigma, and so be the year that real biomedical change starts to happen?

Let's see if we can MAKE it happen in 2015!

PS 
I'm aware that so much more than this has happened.... please feel free to add the moments that were important to you in the comments section.  :-)