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Media nonsense about ME and exercise

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This article has been re-blogged from the Blog http://www.uttingwolffspouts.com which is written by Claudia Gillberg and Geoffrey Jones.  I had to reblog this as it concerns a very important subject that has often been misunderstood concerning the impact of exercise on people with ME or CFS.  The dreadful article on the front page of a major newspaper this week prompted a justifiable outcry from many sufferers of this illness. And it was no wonder – our lives are hard enough without having to contend with this rubbish. The Telegraph article is here http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html  (if anyone wants to read it).

The blogpost speaks for itself – and I love the title :

” THE SCIENTIFICALLY CHALLENGED UK MEDIA STRIKES BACK “

” When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity to its reporting in the press. Indeed, flawed as the PACE trial is, at no point do the researchers suggest GET or CBT cure ME, as claimed by Ms Knapton in her inaccurate and mendacious article1.

Most in the ME community are aware of the substantial problems with the PACE study, including the selection criteria, the self-reporting and lack of objective measures, a flawed methodology, which have been outlined in detail by various authors including Angela Kennedy, Professor Malcolm Hooper, Tom Kindlon, Jane Colby, the late Dr Elizabeth Dowsett and, most recently, David Tuller in the US. Unfortunately the UK media continues its obsession with treating ME as a non-illness affecting lazy people whose only problem is their inability to pull themselves together and push through their fatigue, which seems to be the only symptom the media acknowledge.

To start Knapton states:

‘Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found’1.

Not a single word in that opening paragraph is accurate. The study included a large number of participants who probably did not have ME as the primary criteria for participating was fatigue. Despite this the PACE trial was only able to establish that some participants showed mild improvement while undergoing GET and CBT (though these were self-reported, subjective results). Participants remained ill and severely limited in their ability to perform normal daily activities.  To repeat, any positive results revealed by the trial were barely notable yet according to Knapton,

‘The new study found that graded exercise therapy (GET), in which sufferers gradually increase activity levels, as well as cognitive behavioural therapy (CBT), which encourages positive thinking and behaviour, had a dramatic impact’1.

A definition of dramatic: sudden and striking, impressive3

The PACE trial in no way justifies such an adjective, a more accurate description would be, ‘a negligible impact’ though this would not have supported the slant of Knapton’s piece.

Her next paragraph aggravates matters,

‘The finding is important because many CFS sufferers believe that exercise will make their condition worse.’1

Sufferers do not believe, ME is not a religion (the proponents of the psychosocial model and their media acolytes exhibit cult-like behaviour but that’s a separate issue). ME sufferers know exercise can make their condition worse through first hand experience of the damage it can cause, something supported by scientific studies illustrating physiological damage(4,5).

Two more paragraphs in the article were particularly disturbing:

‘But gradually increasing exercise and therapy to remove patients’ negative thoughts that they would never get better seemed to work. Prof Sharpe said the study was likely to prove controversial because a “minority” believe that CFS is either caused by a virus or is chronic and cannot be alleviated.’1

In what other chronic illness would sufferers be accused of contributing to their illness due to their ‘negative thoughts’? A more clear case of blaming the patient is hard to imagine and to make such a statement with zero evidence to support it, is unworthy of an academic. Suggesting that only a minority believe a virus triggers the disease and that it is chronic is not only untrue, there has never been any suggestion that ME is an acute condition, but a use of language designed to offend ME sufferers. The following paragraph continues in the same vein,

Prof Sharpe added: “It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do. If you live within your limits that becomes a self-fulfilling prophesy.”1

There is no science to substantiate anything the professor states in this sentence and I can think of no other illness in which a researcher would speak of sufferers in such a fashion, it is immoral, breaches the Hippocratic Oath and constitutes abuse of a vulnerable group of patients.

Another point to make, highlighted by John Cohen in Science6, is that the basis of the original trial’s supposed success has been undermined by this latest study. The PACE trial claim that GET and CBT were the best treatments for ME is demolished by the finding in this latest study, which revealed that all therapy options produced the same results. To quote John Cohen,

After analyzing the responses, the researchers concluded that the benefits reported in the original study, which assessed participants at 1 year, were maintained for at least another 1.5 years. But the participants randomized to receive the two interventions that initially did nothing also improved, and there “was little evidence of differences in outcomes” when compared with the people in the other treatment groups’5.

Sharpe et al try to explain this by claiming that participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.

Knapton’s article provides a list of ME symptoms, which exclude post-exertional malaise (PEM) arguably the defining symptom of the illness. It also includes a link to a video featuring Martine McCutcheon talking about the lightning process, telling you all you need to know about the malicious intent behind this article.

‘These are not magic cures’ says Sharpe. Apparently Sarah Knapton disagrees.

A final comment from Professor Sharpe:

‘It’s sometimes quite hard to understand what motivates the very vocal minority that gets upset by this apparently benign bit of moderately helpful treatment’1.

Perhaps some of the headlines in the British media this morning will enlighten the good professor as to why so many in the ME community are upset by his ‘treatment’.

1) http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html?utm_campaign=Echobox&utm_medium=Social&utm_source=Twitter#link_time=1446019914 (Accessed 28/10/2015)

2) http://uttingwolffspouts.com/2015/02/14/chronically-fatigued-the-uk-media-and-the-recently-released-iom-report/

3) http://www.oxforddictionaries.com/definition/english/dramatic (Accessed 28/10/2015)

4) http://www.ncbi.nlm.nih.gov/pubmed/23813081 (Accessed 28/10/2015)

5) http://www.ncbi.nlm.nih.gov/pubmed/25990639 (Accessed 28/10/2015)

6) http://news.sciencemag.org/health/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study (Accessed 28/10/2015)

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CBT & GET – my experience

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CBT & GET – My Experience

To follow up on the recent post on CBT and GET – I thought I would share my experiences of this. I imagine people’s experiences will vary widely.
These 2 treatments are still the main recommended treatments today – here in the UK and also in the US (as I learned last week).
My understanding is that they have helped very few people with CFS or ME – and many have reported that GET actually made them worse.

CBT = Cognitive Behavioural Therapy
GET = Graded Exercise Therapy

CBT :
This is a talking psychological treatment with a therapist, counsellor, psychologist or psychiatrist.
In my case it was with a clinical psychologist in Glasgow in 2004. There was a long waiting list for this – I waited around 9 months.
Well we now know that this does not work for CFS or ME – as it is a psychological treatment aimed at curing a physical condition.
To be honest, my experience of it was reasonable all the same. Compared to many other stories I have heard.
The psychologist was very nice and easy to talk to. He put no pressure on me to feel I should be trying harder and seeking another full-time job. By 2003 my health had forced me to resign from 3 jobs. One after 20 years, next after 1 year, and final one (part-time) after 4 years. And I had left with nothing at all financially – even after 20 years in the main job. So I was feeling a bit of a failure without doubt at that time.
Being able to talk and being listened to and encouraged did help me a lot on an emotional level. (Especially after what felt like brutal treatment and lack of help from a previous GP over more than 12 years.)
However it was no help at all with my CFS. It did nothing to cure it – impossible as we now know. And nothing much to improve it either.

GET :
My experience of this was just silly and a total waste of time.
I was referred to an exercise therapist who was based in a sports centre in Glasgow south-side in March 2003.
The first thing I remember that seemed stupid was I had to fill out a questionnaire – but it was full of questions about your mood, etc. Whereas I had been expecting questions about everyday stuff I found hard – eg. Housework. Or physical activities. By the end of the questionnaire my mood had certainly gone downhill – it had made me feel a bit stressed. As the questions bore no relation to the problems I was having day to day.
Next (after a short chat with the therapist) I was set exercise targets for a month. A combination of outdoor walks and using a sky walker (or elliptical trainer) I had at home. I was to do these every day. And I had activity charts to record my progress – with space for ratings and any comments. The ratings ranged from 8 (very easy) to 15 (very hard & unable to speak).
For the 1st month my ratings were all 14-15. But with no comments. It got no easier – and by the end of the 6th month my ratings were all 15 and I had even added some 16s. Plus I had a lot of comments too by this stage, eg. Felt sick, felt dizzy, felt shaky, back sore after, etc. Basically it was making me worse – but I couldn’t see it at the time.
The therapist phoned me after the 1st month. I said Yes I was sticking to the targets but it was very hard and I wasn’t any better. She said something vague like “well never mind, just keep going . . .” And changed the arrangement so that I was to phone her after month 2 with my “progress”. I didn’t bother to phone her back as she didn’t seem very knowledgeable or helpful. And couldn’t answer any questions I had asked. (She was probably glad I didn’t phone back !)
But I did keep pushing on with it as has always been my way. Although very stupid in this case. Then eventually gave in and just stopped.
I do realise that I was very lucky that the GET didn’t push me into a severe relapse though – as has been the case with others. And I was also lucky that my therapist was fairly uninterested – as many others have been pushed on too far by over-zealous therapists.

My thoughts now :
GET should be abolished. And CBT only offered as a complimentary treatment.

CBT & GET used in US too

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CBT & GET

In my Reasons For Blog post I mentioned the treatment (or mistreatment) of people with CFS and ME has become a national and world-wide scandal. And it feels that almost every week something else happens to emphasise this.

2 things this week :

1) The #MEinsults timeline that took off on Twitter.

2) The CFS Advisory Committee meeting in the USA

I will just cover (2) in this post.

I didn’t know much about this until I saw a message on twitter. To explain :

The CFSAC are the Chronic Fatigue Syndrome Advisory Committee in the US. They provide advice and recommendations to HHS.gov (the Dept of Health and Human Services) on issues relating to CFS and ME.
They met a few days ago to listen to presentations and submissions from people involved with CFS & ME – including sufferers themselves (or their representatives). One of the recommendations made from a mother of a severely affected sufferer was that use of The Toolkit should be stopped with immediate effect.
I didn’t know what this was. Now I read it I see it is the recommended treatment and uses GET (graded exercise therapy) and CBT (cognitive behavioural therapy).
Just like the UK.
Unbelievably the AC have now decided to continue using the Toolkit despite the impassioned plea against it. Very depressing. There are millions of sufferers in the US and this means no new hope for them.

GET has been described as a type of torture for people who are very ill. For others it ranges from being no use at all to making their condition much worse. And even pushing them from a mild or moderate state (both still very bad) – into the much worse severe or very severe level. There seem to be very few people helped by it, if any. Yet it is still one of the two primary treatments in the UK and USA.
It is scandalous.

CBT is a psychological-based talking treatment – except that it does nothing to treat the condition and therefore has no chance of curing it. Or even improving it. But this is so obvious when it is a psychological treatment being used for a physical illness. And it is still the other of the two main treatments today.

The fact that the CFS Advisory Committee have ignored advice made to them just seems plain stupid. And will just cause further despair for so many.

More of those comments

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Have you no hobbies to fill your day ?

What – on top of being a Landlady and trying to keep a property portfolio (albeit a small one)  afloat thru the credit crunch & recession ? And the daily struggle with household tasks?  I‘m just grateful if I have any energy left over to eat my dinner or watch TV some days.

Your lucky you don’t have children – as you would just have to get on with it.

How would that work then?
Have you tried just getting on with it when you don’t have enough strength left to even stir a cup of tea ? But even more seriously – the whole issue of people with CFS or ME not managing with their children can cause much guilt or heartbreak.  Just read the book Shattered by Lynn Michell – there is a heart-rending section about this in it.

Nobody can be that tired (that they can’t make a phone call)

Want to bet ?
I rely on email a lot because of my CFS – as you can take as long as you need (to think) plus stop for many breaks. You can’t do that during a phone call – the person would just hang up on you.

I know you have your issues  

OMG – my “issues” – what are these then ?
From a friend I hadn’t seen for abbout 18 months. Did you maybe mean to say how are you and how are you getting on . . . ?  No ?  Oh well .

You must keep exercising – no matter how bad it makes you feel.

Unbelievably this was from the GP I kept going back to for years and years before I got diagnosed. She was very abrupt. In fact I’m not sure she was actually a GP – just somebody doing a very bad impersonation of one . . .

Let me know when you will be ok to go out 

How will I know ? Understand this one if from people who don’t really know me – or anything about CFS. But from other people . . . A bit frustrating.

She gets a bit tired at times.

This from my husband trying to explain it to people for me – and failing dismally . . . !  A major cause of much stress and rows over the years – but that’s another story.

Just let me know in advance if you cannot make it

Again – how will I know ?

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