(Not a recommendation) Alastair Miller: The prognosis of CFS/ME

Posted by: "Dr. Marc-Alexander Fluks"
Sent: Saturday 13 January 2018 10:46
To: LOCALME <localme@yahoogroups.com>; MEACTIONUK <meactionuk@yahoogroups.com>; MECHAT-L <mechat-l@listserv.icors.org>; Colin Barton <colin.barton@btinternet.com>
Subject: Alastair Miller: The prognosis of CFS/ME

The prognosis of CFS/ME ----------------------- Alastair Miller

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.

--------
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).

 

https://twitter.com/user/status/952227659127443457

 

In other words having a fatiguing illness that isn't ME.

 

As discussed in this thread, my guess is Colin Barton sent it to Mark:
https://www.s4me.info/threads/not-a-recommendation-alastair-miller-on-cfs.1685/

 

Didn't Freud say the same about psychoanalysis?

 

The question I would like answered by those who hold such beliefs is:

In what use of the word "same" do the third who recover have the "same" illness as the third who do not?

 

Yes, it is the way you think about it before you bother to look at any evidence. And if you do not look at any evidence you go on thinking about it that way. It is also self fulfilling in that everything can be divided into thirds. Except that it seems there is a fourth group who get worse so it is quarters. Oops!

Blather like this provides useful grist for getting guidelines changed I think.

 

I'm not sure if he even understands the difference between, "thinking about prognosis in thirds", and splitting prognosis into three groups.

He doesn't seem to want to provide any data showing that 33.33333...% achieve x and the two other groups of 33% achieve y and z.

He even says this...

That's bollocks, its got sweet FA to do with some groups, it's the data that counts and that data does not show that a third of people recover.

Somehow we are just supposed to ignore all that and the PACE trial spin now that they have been exposed and just trust his anecdotal reports and ignore all of out own experiences.

He does go on to say this.....

not realising that even he is saying that two thirds don't recover using CBT and GET, but also at the same time doesn't prove that the people claimed to have recovered weren't going to recover from whatever they had anyway with no intervention.

 

Do they even have those on the NHS for ME patients? Rainbow fart-powered roller skating unicorns are probably easier to find.

Spoiler: Warning: graphic content

 

https://twitter.com/user/status/952264190869327880

 

This "thirds" idea crops up again and again in medicine for a wide variety of conditions. It is a common myth that is never supported by evidence. I think doctors like to believe myths like this as the truth is more gloomy.

The thirds claim also makes no sense as there has to be a specific time threshold for it to be an actual prediction. Otherwise through compounding, the numbers will change.

As for the NOD data, I'd certainly like to see it. We know from the Belgian data that CBT (and other therapies) made no difference to outcomes, so a different result in the UK would be surprising.

 

Same as this thread surely? https://www.s4me.info/threads/not-a-recommendation-alastair-miller-on-cfs.1685/page-3#post-29135

Edit: I see @Tom Kindlon already highlighted this.

 

It also misses the point that as anecdotal reporting, whilst only using one treatment and no control group, it shows that 3 groups just produced the same possibilities if one was to outline three possibilities before the trial commenced - ie/ people could improve, stay the same or fully recover.

I've also heard this third a third a third thing before, its used in business profit and loss,
a third wages a third overheads and a third profits.

I think he heard it and just rolled it into his own crap. Its a nice soundbite.

 

Yes, I've heard the 1/3 + 1/3 + 1/3 anecdotes over the place - but he is not the only one to repeat this nonsense, for example I've seen Michael Sharpe repeat it (ABC radio Australia) referring to the PACE trial results. Michael Sharpe should know better - but we know he doesn't seem to care about accuracy.

Edit- BTW, this is one of the NOD studies (Crawley et al 2013)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/

It doesn't mention "recovery" at all.

There is the following study, but only 27.5% of patients self reported significant improvements and they pooled "much better and very much better" so we don't know how many people said "very much better" which can indicate recovery, whereas "much better" still indicates illness.
https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3
(Crawley 2017)

 

Tom Kindlon
https://www.ncbi.nlm.nih.gov/pubmed/28709432#cm28709432_73366

The average four-point change on the 0 to 100 physical functioning subscale of the SF 36 is really quite small.
I could imagine people without any therapy after being diagnosed could improve on average by that amount.

The English clinic patients patients in the 2013 paper only also improved by 4 points (4.4 to be exact)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/

The specialist medical care-only group in the PACE trial (i.e. they just saw a doctor for a few appointments) improved by 11.6 over 12 months on this questionnaire:
http://www.thelancet.com/action/showFullTableImage?tableId=tbl3&pii=S0140673611600962
https://twitter.com/user/status/952328422142959616

https://twitter.com/user/status/952330295247765504

 

Not the same piece

 

I love that use of the term "pre-disposing illness". Just to leave no doubt he thinks that your psychological freak-out about exercise is only tenuously connected to that illness.