Newry & Mourne Group receive Expert Statement from Dr Jonathan Kerr

Joan McParland of the Newry and Mourne ME Fibromyalgia Support Group says she is delighted to receive another expert statement refuting the recent press coverage of ME and exercise fears.

Dr Jonathan Kerr, sent this reply: 
Statement on the publication:

Chalder T, et al. Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial. Lancet Psychiatry 2015;2(2):141-52.

Dr Jonathan R Kerr  MD, PhD, FRCPath, Associate Professor of Epidemiology, Universidad del Rosario, Quinta de Mutis, Bogota 111221, Colombia.

The latest paper by the UK Psychiatrists whose focus of study is Chronic Fatigue Syndrome (CFS), demonstrates some quite incredible psychology. It begins with the assumption that Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET) when added to specialist medical care improves physical function. And the purpose of the paper was to examine the ´mechanisms´ involved. They concluded ..

´Our main finding was that fear avoidance beliefs were the strongest mediator for both CBT and GET. Changes in both beliefs and behaviour mediated the effects of both CBT and GET, but more so for GET. The results support a treatment model in which both beliefs and behaviour play a part in perpetuating fatigue and disability in chronic fatigue syndrome.´

So, what is the meaning of this? In words that most would understand, this means that if you are a CFS patient and you want to get benefit out of the only government-approved CFS treatments, you need to get over your fear that these treatments will lead to a deterioration in your health. More fundamentally, this means that to overcome your mental block (which prevents you from getting better), you need to dispel any mistrust in the psychiatrists and their science, because they know better than you what is best for you. And no mention of enterovirus, Epstein-Barr virus, Parvovirus B19, exposure to organophosphate pesticides, vaccination, immune dysfunction, etc. How simple it could be if patients would just give their complete trust in the absence of supportive evidence.

In response we might feel frustrated by the almost unbelievable disregard for the reality of the biological disease in question, but, in my opinion, it is better to first understand why we may have found ourselves in this situation.

CFS is unique in that there are no reliable and verifiable findings on standard clinical examination. And, so people could theoretically lie about whether they suffer the symptoms of it or not. It seems to me that the basis of this whole situation may be that powerful employers do not want to risk the situation of having to pay sickness compensation based on non-verifiable symptoms as stated by individual patients. And, if CFS becomes accepted as a biological disease, CFS patients and anyone wishing to receive sickness compensation, would have the power to receive it anytime they might wish. And so, such powerful employers may have donated money for ´research´, which may then have been awarded for psychological research with the purpose of ´discovering´ the psychological pathogenesis of CFS itself, and (as in this latest paper), to explain the psychological reasons for non-response to the psychological treatments. Therefore, the problem has most likely been solved for such powerful employers, as we know that psychiatric diagnoses are not covered by sickness compensation schemes, and there is a body of psychiatric research on CFS going back decades, which is regularly used by some to demonstrate that CFS is a psychological disease.

If the above is true, is this the reason there are two camps regarding beliefs on the pathogenesis of CFS, with little trust between them? Why do the two research camps not trust each other? I suppose that the psychiatrists might say that such lack of trust indicates psychological problems in the mistrustful individual, but to me, that would depend on the context, and there seems little wrong with the intuition of most CFS patients who do not trust in CBT and GET. There are no other diseases, to my knowledge, where we see two such totally divided camps which differ on their beliefs about not only the cause of a disease, but also the lack of response to treatments offered by one side only.

Just in case this statement is misunderstood. I do not believe that CFS patients tell lies about their disease, and I do believe that CFS is a real disease with a biological pathogenesis, that is triggered by virus infection resulting in chronic immune activation and a long-term flu-like illness with disastrous consequences for patients. I believe that CFS results in real and sometimes severe disability which may be life long. I do not believe that CBT and GET are valid treatments for CFS, and I do not believe that patients´ fear avoidance behaviour is the reason that CBT and GET do not perform optimally in those patients that it does not help.

What's SEID Matters!

So when I first saw the name "Systemic Exertion Intolerance Disease" I was relieved: At least the word "fatigue" was gone!  No more "Chronic Fatigue Syndrome" slurs for us, I thought.

Acknowledgement at last?

The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness. 

The word "disease" in there pleased me in those first moments too, and the fact that the disease is recognised as "systemic" - that's got to be good too? Right?  Finally add in the fact that the name describes patients' intolerance of exertion, and you'd think I'd be totally won over by the name....

But I'm not!

SEID - Systemic Exertion Intolerance Disease - still sounds a clumsy, descriptive and not a really serious name.  It doesn't portray any of the seriousness of the very severe end of the spectrum, and implies that if we just avoid exertion then we will all be fine and dandy.

Would folk with Diabetes be delighted with "Systemic Sugar Intolerance Disease"?
I doubt it.

Nice name or not, the IOM report on redefining ME/CFS was released yesterday 10th February 2015.  This 304 page report could have far reaching implications for ME patients world wide.  A Key Facts document and a Power Point presentation summarise the main findings of the committee.

The first thing I wanted to see was how the IOM proposed to diagnose the disease.  And again, at first glance this makes a lot of sense.

Click on any image to make larger

Yet, for me, I was a little uncertain about the "unrefreshing sleep" compulsory criterion.  At the time I was diagnosed my sleep was okay.  It is less good now, because I tend to wake much earlier than I want.  So am I refreshed?  Well I'm better than if I'd stayed up all night, but I'm still "ill".... does that count as "unrefreshing sleep"?

Then the question of what is meant by "Post Exertional Malaise".  If I exert myself I my body has two responses: one at the time, when my heart races, and I quickly run out of steam; and the other two days later when I feel like I am drunk, have flu and a migraine all at once!

This descriptor doesn't seem to insist that the patient has a delayed response, similar to the type revealed by the 2 day CPET test.  So could a patient, with symptom exacerbation just at the time of exertion or in the few hours directly after exertion, qualify as having PEM for the purposes of this diagnosis?

And if so, is that description true to what many experts feel is the central issue of Myalgic Encephalomyelitis?

And why again was the perfectly adequate name of Myalgic Encephalomyelitis, recognised by WHO since 1969, dropped?

Much debate has been stirred up within the ME community, and already Dr Enlander has spoken up to state his concerns:

And the media? Well they just think, new name for old condition.... so they look up all the old CFS material and tell the populance that Cognitive Behaviour and Graded Exercise Therapies are known to help.  I sure hope that some-one in authority will consider putting the press right on that issue fairly quickly.

Sadly, when a question about GET was asked at the presentation of this report, the committee evaded answering and said that treatment recommendations were outside of their remit.  Ho hum!  

So, looking on the bright side, what might be good about this report?

Well one good thing I can see, is if this report brings in its wake a huge dose of funding for real biomedical research!

As for the new name?  Well, now that I've thought about it overnight, I realise that it is not a name I will ever voluntarily use to describe the disease that afflicts me.

I have Myalgic Encephalomyelitis!

Northern Irish Patients Rally Round.

There is a tangible feeling in Northern Ireland, that change is in the air for the treatment of ME and Fibromyalgia!

The Patient and Client Council (PCC) has recently delivered invitations, to an ME and Fibromyalgia Symposium, to medical professionals and MLAs in Northern Ireland.

To ensure a good attendance at this event, patient groups are now united behind a move to write personal letters to GPs and MLAs encouraging them to attend.

A template letter for download can be found at this link. 

The Symposium speakers include: 

Dr William Weir FRCP, from London 

Dr Pamela Bell, of the Pain Alliance NI. 

A video link to a UK researcher and another specialist clinician (names to be confirmed) 

Several patients, who will talk about how ME and/or Fibromyalgia impact on their lives.

Currently there are no Specialist ME services in Northern Ireland, and services for Fibromyalgia seem inconsistently offered.  It is hoped that this meeting will help to raise the profile of these two diseases and also highlight the need for a radically new approach.

Replies to the invitation are due on Tuesday 17th February, so THIS WEEK is THE WEEK to make a difference.  If you are in Northern Ireland, please support the efforts of the charities:

• ME Support Northern Ireland, 
• FMS/ME Awareness NI, 
• Fibromyalgia Support Northern Ireland, and 
• Newry and Mourne ME Fibromyalgia Support Group

You can download, and personalise a template for promoting this event here. 

Some patients are also personalising the letters with a hand-written cover note.  I intend to add a short note about my illness - probably something like this:

I became ill with ME on 1st March 2012.  Having previously led a very active life including: mountain walking, riding horses, and keeping a large organic garden. I am now very disabled, restricted to using a mobility scooter, and sadly I have also lost my teaching career.   

There is no specialist consultant led clinic in N.Ireland to which I can be referred, and many doctors are still working from outdated guidelines about the nature of the illness.
Please help by supporting this event.

Please, if you are at all able, help us to ensure that this event is really well attended.  

We need to make our voices are heard.  
PS This is not a patient event.  However representatives from the charities (mostly patients) and the patient speakers will be in attendance.

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: