(Not a recommendation) Alastair Miller on CFS

Alastair Miller calling CBT and GET "definitive therapy"

http://www.meassociation.org.uk/wp-content/uploads/BACME-guide-with-pharmacology-30-06-2015-copy.pdf

 

http://forums.phoenixrising.me/inde...support-david-tuller.51439/page-4#post-857305

Action for MEs Facebook page has this:
Colin Barton The prognosis of CFS/ME – Dr Alastair Miller 29/3/17

Despite a huge investment in biomedical research in the field of CFS/ME, there is still no unifying mechanism that explains the development and persistence of the syndrome. Neither is there a simple laboratory test that can confirm nor exclude the diagnosis. The diagnosis remains a clinical one made by an experienced clinician and based on a very characteristic pattern of symptoms. Although every patient’s experience may differ, the overall constellation of features makes the diagnosis clear so it is a positive diagnosis rather than a “diagnosis of exclusion” (although it is usual to perform a number of simple laboratory investigations to ensure that no alternative or additional diagnosis exists).

Once the diagnosis has been established there are two questions on everyone’s mind. What is the treatment and what is the prognosis (outlook)? I have not been asked to review the treatment here and it remains controversial but suffice it to say that in line with the lack of a disease mechanism there is similarly, a total absence of pharmacological approaches to treatment. So although some drugs may be helpful in relieving specific symptoms, there is no drug that will affect the overall natural history of the condition and effect a “cure”. Although NICE guidelines and the PACE trial remain contentious amongst some patient groups there is absolutely no doubt in my mind that the current approaches of cognitive behavior therapy (CBT) and Graded Exercise Therapy have helped and continue to help a large number of people to recover from the condition. This is based on my own personal experience, trial evidence (PACE and others), anecdotal experience from colleagues and patients and data from the National Outcomes Database (NOD).

Many of the websites give (in my view) an unrealistically gloomy picture of the outcome for CFS/ME. It is likely that those who still suffer from the condition may contribute more vociferously to the websites whereas those who have recovered may prefer to move on. Apart from the NOD there is little scientific data on which to prognosticate so my views are based largely on anecdotal experience gathered over a 30 year career of involvement with this condition. However, they are largely in accord with the NOD data.

In my view the simplest way to think about prognosis is in “thirds”. Using best available therapy (CBT/GET delivered by trained and experienced therapists), approximately a third of patients will make a full recovery and return to their pre morbid activity, about a third will improve but not recover fully and about a third will stay the same (and a small number may deteriorate).

There are various markers of a good prognosis:

• Having a relatively acute onset with a specific pre-disposing illness
• Not having any ongoing specific aggravating factors such as disputes at work, relationship issues, litigation etc
• Having an open mind about the causes and disease mechanisms
• Early engagement with a good therapist

Conversely, the markers of a poor prognosis are

• Having a slow onset over a number of months with no obvious precipitating illness
• Having ongoing perpetuating factors (as above)
• Constantly looking for an alternative biomedical explanation for symptoms
• Using alternative, unproved and often expensive approaches to therapy.

In summary although the prognosis overall is variable and for those with severe longstanding symptoms and quality of life is severely impaired, overall the majority of sufferers will improve with time. Hopefully in future we shall have therapies that can improve this prognosis further.

(Conflicts of Interest. Alastair Miller is now retired from CFS/ME practice but spent 10 years as Clinical Lead for CFS/ME at the Liverpool Infectious Disease Unit. He reviewed adverse events for the PACE trial and was on the Trial Steering Committee for the GETSET trial. He was Chair of the British Association for Chronic Fatigue and ME (BACME) for 3 years and Principal Medical Adviser to Action for ME (AfME))"

 

Marc Fluks believes all sorts of odd stuff regarding masonry but I would have no reason to believe he would tamper with this. It is a pity there is not a weblink or something more solid as a source.

 

Unfortunately the list owner of Co-Cure passed away so the system doesn't work as well now and only a few of us can post (we're not moderators but can approve our own posts).

The Co-Cure archive is a useful resource to search for documents no longer on the internet.

This archived page gives further info on Co-Cure:
http://web.archive.org/web/20140626163234/http://www.co-cure.org/

 

The fact Colin Barton posted this piece by Alastair Miller along with what I already knew (Colin Barton's own views and history of posting and that Mark Fluks sent him a copy), makes me think there is a high chance Colin Barton sent Mark Fluks the original post.

 

Wherever it came from this document makes a point of mentioning Alistair Millar's role in AfME.

It would be interesting to hear their opinion on this document and whether they support the claims made in it.

 

"CFS is purely a symptomatic condition."
...
I read this early this morning and mulled it over a lot. As someone who has no ideas about any of this the letter reads as someone trying to be balanced and reasonable. But then there's this sentence.
What you're telling me, whoever wrote this, is that there is nothing wrong with me. That if I ignore it, it will go away.
Whatever you're talking about isn't what is happening to me. I have, with absolute faith, performed my own GET and am very good at CBT. I do not really, deep down, believe I am sick, and repeatedly behave accordingly. My family have had to force me to realise that this thing is real, that I can't just brave it out and that doing so has an awful adverse impact on those who have to live with the result.
I see people these days who saw me nearing my worst but on a good day and they tell me I'm looking really well. So in that sense I have improved. What was the remedy?
The only thing that has helped me is to recognise that this is a real disease, that lack of biomarkers doesn't not mean lack of pathology, only a lack of knowledge and that, like a person with diabetes in the 1700s, my best remedy is not a patent remedy with great marketing, nor a cutting edge idea from fumbling science, but rest, pacing myself, and living within the absurd limits my life currently has. One day someone might find, test, and replicate proof that they can do something about it. But at the moment, the best I can do is avoid the things that patently make it worse (for diabetes sugars, for me 'exertion'/effort beyond my current tiny limits). Neither is a cure but it is management.
Ultimately, I looked at this email with an entirely open mind. I thought hard about the possibility that I might be missing something and that you have seen more than I. But, it was this sentence that made it clear that you don't know what you're talking about.
As a clinician, sure, the only thing you can do right now is treat the symptoms. But as a researcher, you have clearly stated that you don't believe there is anything to find and will happily lump in anyone who feels tired or discouraged with me.
I have the world to live for, so much I need and want to do and absolutely nothing holding me back but this body. I can ignore the symptoms. What I can't ignore is the way that that approach stops me from functioning at all.
What makes me sad is that I can easily see you looking at my experience and saying that GET and a better attitude works for me. But in fact, I am more upbeat because I have found a way to putter in my life and the resignation to accept a shambling life, for now.
"CFS is purely a symptomatic condition." You tell me, is 30% of pre-illness function (with a drop to 10% if doing 40% the day before) a cure? I have my symptoms under control but CFS is most definitely not gone.

 

Ah, yes, that "huge investment" must be why Dr. Lipkin likened the raising of funds for ME/CFS to "begging for quarters," and why he and Dr. Hornig found themselves downing hot chili peppers in order to attract donations.

 

Dr Alastair Miller is still listed as Medical Advisor to the bizarre and possibly aberrant 'Sussex and Kent ME/CFS Society', supposed patient ME Charity.

Professor Esther Crawley is also listed as Medical Advisor to the Sussex and Kent ME/CFS Society.

http://measussex.org.uk/about-us/medical-advisors/

http://apps.charitycommission.gov.u...teredCharityNumber=1082681&SubsidiaryNumber=0

 

Having read your subsequent posts showing further writings of Alastair Miller, they are in very much the same vein as that in your original post of this thread, so to me the odds are high he wrote it.

 

I find this bald confidence in accurate positive diagnosis a bit disconcerting, and I wonder if this maybe ties in with Dr. Miller's rapturous faith in CBT and GET. Are people getting positively diagnosed over-confidently and mistakenly? And thereby his clinics curing secondary chronic fatigue, not ME/CFS? Dr. Miller seems remarkably self assured at how easy it is to diagnose ME, even suggesting it is not really a diagnosis by exclusion, seeming to almost imply that the additional lab tests, for him at least, are barely necessary. Feels almost like someone whose faith in themselves exceeds scientific justification.

Or am I being unfair here? Is he in fact right, and if a doctor really knows their stuff, they should be able to diagnose as he suggests? Are the lab tests in fact just a back-up corroboration of what the doctor is pretty sure of anyway? If he is in fact right on that particular score, then I much prefer we understood that properly.

 

Colin Barton's group.

 

Cosy.

 

Medicine has always been guesswork. It is more science-influenced than it has been in the past, but we are still quite far from comprehensive science-based-medicine.

I'd say the ICC and CCC are quite specific "positive" diagnoses, but NICE and Oxford are still quite nonspecific.

 

I beginning to think that CBT and GET act as placeboes... for doctors who are depressed at having no effective treatments for CCC/ICC ME/CFS. Of course, the placebo works best when you conflate ME/CFS with chronic fatigue.

 

tsdr but:

> CFS is purely a symptomatic condition. If you have no symptoms you do not have CFS. Therefore if we can relieve/improve the symptoms we relieve the disease.

"granny smith apples are purely color apples. if there is no green you do not have a granny smith apple. therefore if we can remove the green we remove the apple."

 

Absolute bollocks. I am currently sitting on my sofa feeling symptom-free. But I still have the underlying disease that is CFS. People can go into remission for years and get symptomatic again, they probably had CFS all the time rather than re-catching it. What this idiot is saying is that he doesn't believe that there is an underlying disease.

 

Correct.

 

Just to say that Colin Barton definitely posted this on the MEA's facebook page on 28th December. I deliberately ignored it because, having posted EC's TEDx talk there on 24th Dec (-Merry Christmas!) i felt Barton was likely being provocative & trying to get a rise out of people, or get ammunition to enable him to paint the MEA as part of the whole activist/anti scinece nonsense.
It got no responses, presumably because of the date, & on 30th Dec he posted it again, when it did get some comments. (At which point he must have deleted the 28th Jan post as it disappeared (so it doesn't now show up in visitor posts but the 30th Dec one was still there yesterday when i checked).
But im categorically certain that it was initially posted on 28th because it was directly underneath someone's 'early new year wishes' msg, & i was periodically watching & hoping that people would keep making posts in order to move it down the page before it got any notice.... (Which is what happened & then it appeared again 2 days later) I'd have posted something myself to make it move down quicker but was too ill to think of anything/do it.

My point being that Colin Barton is obviously very enthusiastic about it to post it twice in same place. Of course i could be wrong, but combined with the posting of the TEDx talk it all felt a bit provocative to me so i deliberately didnt respond & point out what a totally disingenuous load of **** Miller was talking.
But really...talk about misdirection! He (Miller) being an 'expert' knows perfectly well that the CBT given in cancer & CFS are completely different, & he also knows perfectly well that its not only patients who are critical of the BPS hypothesis, & to publicly direct unwitting readers to any other conclusion is disingenuous & manipulative.
It's all very revealing isnt it.

ETA i was commenting only that Miller is being manipulative in his misdirection here, not commenting on Mr Barton, - only to say that he appears very enthusiastic about sharing Miller's article/letter/whatever, (enthusiasm which may be borne out of ignorance & good intentions of course). I mainly just wanted to possibly help shed light on the article's origins.