Thursday, 12 February 2015

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.

Wednesday, 11 February 2015

James David Chapman on SEID, & IOM Diagnostic Criteria

Question. ME patients come with baggage. In addition to a devastating illness that perfectly and dynamically resists our best efforts, we have spent decades carrying the weight of social disbelief, denial and mistreatment. Yesterday, Feb. 10th 2015, the Institute of Medicine, IOM presented us with a choice: Do we want to change the name and diagnostic definition of our condition? We should, I think, be grateful for the choice at least. M.E, Myalgic Encephalomyelitis and CFS, Chronic Fatigue Syndrome consume life and the number of choices we are allowed to make is very limited indeed. The IOM panel has worked hard and, in addition to their broad review of the available research (9000+ documents), they have listened carefully and respectfully reported back to us as patients. Making choices is exhausting when you are unwell. We will have to fight the “brainfog” to read and understand and then we will have to spend huge amounts of our energy discussing, bickering and worrying over the years to come. The reception of the IOM criteria were always going to be coloured by the fact that our community advocates and physicians wanted the adoption of a different, pre-existing criteria: The Canadian Consensus Criteria, or CCC. That our advocates were overruled on this *at the outset* did not appear to bode well. Thankfully, with our primary symptom PEM, (Post Exertional Malaise), front and centre the IOM diagnostic criteria are most certainly worth discussing. Further, they do appear to have a strongly physical, as opposed to psychological bias and could, in the best-case scenario, spell the end for the wearisome label "Chronic Fatigue Syndrome". Many of us would dearly wish to unpin the scarlet letters: "C.F.S." from our coats and will, I think, welcome the IOM’s report. Even the discussion and challenge to the status quo itself will increase awareness and bring light to our situation. The IOM presents a new name: Systemic Exertion Intolerance Disease, SEID; It’s clearly a bit of a mouthful (the cool disease names in medicine must have already been taken). The IOM's decision to found a new name on our primary symptom is extremely sensible: PEM is one of the few things that our community generally finds agreement on and causation is still debated. The name change: "CFS -> SEID" may well be seen as a step in the right direction whereas, conversely, the name change "ME -> SEID" may well be perceived to be a loss of ground. This may mean that SEID is received differently in Europe than in the US. I think it is fair to say that the success of the new IOM criteria will be judged on the uptake of the name, and, to be clear: renaming is a very bold move. Many patients cling tightly to Myalgic Encephalomyelitis, M.E, and as well they should for it has withstood continual attack for decades and has itself provided patients with an important degree of protection. A diagnostic definition founded upon subjective symptom experience as opposed to objective, measurable, signs is certainly going to be controversial. Further the suggestion of further name changes in the future is extremely unappealing (though perhaps inevitable in a field where research has been so limited). More concerningly the IOM did not feel able to perform the sub-grouping most believe to be necessary within the heterogeneous population defined by "CFS" and the broader criteria of the past, (eg: Oxford). Sub-grouping is important because the criteria for “CFS” may have, paradoxically, created a superset containing both patients who are helped by exercise and patients who are harmed by it. The vital first job of any new diagnostic criteria that attempts to reclassify CFS patients should be to separate those with subjective fatigue (more akin to “acedia”) from those with objective, physical, conditions. This would allow all patients, subjectively and/or objectively unwell, to be directed to appropriate treatment. For example: every MEcfs patient must choose whether to respond to symptoms with rest or exercise. A patient's life, and certainly their quality of life, may well depend on getting this decision right (perhaps within the first 6 months) and physicians cannot, I think, leave patients to make this vital choice alone. Conversely, patients need to be able to see both options presented to them fairly. The IOM criteria have much in common with the strong, Canadian Consensus Criteria, CCC. This can be viewed in a negative light, presenting SEID as little more than "truncated CCC" or we can choose to see the existence of CCC, ICC (International Consensus Criteria) and now the IOM SEID criteria to be mutually reinforcing and to present a credible body of work pointing towards an objective and clearly defined disease. The IOM report helps to underline this by rejecting suggestions that the condition is imagined, psychosomatic or the result of phobia. Many M.E patients report, (and have reported for many years), that Graded Exercise Therapy, GET made their symptoms worse – much worse. I think "Exertional Intolerance" makes GET, more difficult to justify but a stronger, more explicit, statement on GET by the IOM would be very helpful. Linguistically, "Intolerance" can still allow physicians to state that SEID patients might helpfully gain tolerance to exertion through gradual exposure to exercise. However, this situation is perhaps unavoidable: Nothing seems to be able to kill off GET in some physicians' minds! Indeed, before the IOM report day was done, the phrase "counter intuitive" had been used online to simply flip over the whole patient experience of Post Exertional Malaise in an attempt to justify GET. Perhaps, realistically we must accept the persistent inversion of MEcfs patient reportage cannot be ended by one single report. It is very easy to succumb to optimism when, after decades of denial, your condition appears so thoroughly validated at the highest levels. It is also very tempting to see a major shift occurring in MEcfs at present. The initial reaction of many patients and advocates online to IOM SEID has been positive. However, many have reacted to SEID with horror. “Stockholm Syndrome” was even raised. Many MEcfs patients have reported mistreatment and many consider their mistreatment to have crossed the line into abuse. The concern therefore is that the community might accept IOM criteria merely as a reaction to misplaced feelings of gratitude and thankfulness that it "wasn't as bad as it could have been". In the end, I think that IOM SEID itself isn’t cause for celebration nor cause to dress in black. It will be what we make of it. Those who have concerns must voice them and in so doing will protect the community; at the same time, those who are optimistic will, I am sure, use SEID to push the issues forward and inch us ever closer to resolution. I think members of the MEcfs community must judge SEID and the IOM diagnostic criteria on merit and in comparison with CCC, ICC (and other ME definitions). In general terms, as is often the case in MEcfs, we find a polarisation between those who wish to take a pragmatic position and those who want to maintain firm principles. Both viewpoints have their respective strengths and weaknesses - and we must each determine our own view. The isolation of our condition in combination with social exclusion has, for years, left us alone in the dark. We now find that the 'net is bringing us all together. Whatever researchers, physicians or advocates may say, MEcfs patients will now make their own decision about SEID. I suggest we trust them to do so. They are smart, informed, and passionate and, in a very real sense, their lives depend on making the right choice. James David Chapman. @batteredoldbook

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!

Monday, 9 February 2015

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.