2011 Alastair M Santhouse funny BMJ letter re PACE, etc: Acknowledge good intentions of researchers in CFS/ME.

I just came upon this, and thought it was pretty funny how badly it has aged. The first two sentences are hilarious imo: the "obvious paradox" and then the "should be proof enough". He's showing off about the fact that he doesn't know how to think. Should be proof enough?!

Acknowledge good intentions of researchers in CFS/ME

Alastair M Santhouse, consultant in psychological medicine1

+ Author Affiliations 1South London and Maudsley NHS Foundation Trust, London SE5, UK

There is an obvious paradox in wanting more research into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) but rejecting research that is not liked, with claims that it is unscientific.1 “Science” is the application of the scientific method, and the sound rebuttals by the Medical Research Council and the Lancet to allegations that the PACE trial was in some way improper should be proof enough. That the PACE trial found cognitive behavioural therapy and graded exercise therapy to be safe while moderately improving outcomes in CFS/ME would cause great satisfaction to doctors and patients in any other branch of medicine. Entry criteria to the trial were broad,2 3 4 but subgroup analysis on more narrowly defined CFS/ME gave the same results.

Although such treatments do not work for everyone, undoubtedly they benefit some. It is precisely for these reasons that we have trials in which treatments and outcomes can be standardised. Of course we need research into other areas of this condition, but let us also acknowledge the good intentions of researchers and doctors involved in all aspects of this field. Notes

Cite this as: BMJ 2011;343:d4550 Footnotes

Competing interests: AMS is a specialist medical care doctor, PACE trial, and member of the guideline development group of the National Institute for Health and Clinical Excellence (NICE) CFS/ME guidelines.

References
1 Hawkes N. Dangers of research into chronic fatigue syndrome. BMJ2011;342:d3780. (22 June.) [FREE Full text]
2 Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, et al. A report—chronic fatigue syndrome: guidelines for research. J R Soc Med1991;84:118-21. [Medline] [Web of Science]
3 Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, et al; International Chronic Fatigue Syndrome Study Group. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res2003;3:25. [CrossRef] [Medline]
4 National Task Force. London criteria. Report on chronic fatigue syndrome (CFS), post viral fatigue syndrome (PVFS) and myalgic encephalomyelitis (ME). 1994.

 

Then, as now, we will not "acknowledge good intentions" while these researchers continue to fail to make any attempt to build trust with the patient community.

 

You can want more food, but can reject a "spider goulash" on the grounds that it isn't proper food.

Well, most of us can...

 

Well, his letter certainly is not an application of the scientific method - more the method of the Catholic Church - believe what you are told by the wise looking after you and don't ask questions.

The PACE trial would cause no satisfaction to doctors and patients in other branches of medicine. In fact in any other branches medicine it would be seen for the nonsense it is. And that is what has happened.

 

The title says that we should acknowledge good intentions of researchers, but the text implicitly asks us to accept conclusions that are contradicted by the data. Nonresponsive statements of biased parties such as The Lancet or The SMC are not an acceptable rebuttal of criticism. Incorrect application of the scientific method is not science.

 

At school I had an PE teacher who took a bunch of people who could run the 100 metres in 15 seconds or under. He wanted to improve our times so he decided he would set the target of improvement to 14 seconds or under and train us physically and encourage us mentally for six weeks then review the results. He was attempting to prove his skills in a technique he had developed.

In week three he went to the head of department and asked if he could change the definition of an improved time to 16 seconds and the head duly obliged.

Towards the end of the trial he stopped using his stopwatch to measure our times and relied on self reports.

At the end of the six weeks he claimed considerable success using the 16 seconds marker.

Disclaimer: none of the above actually happened but you get my point!

 

It may be what is happening, may, but I would dispute that it has already happened, in any way which will affect me, a pwME, in the UK, right now.

 

What @Wonko said

 

I realise it is not going to affect you yet but what I was meaning was that pretty much whenever an academic without vested interests in psychotherapy has been made aware of PACE they have agreed it is nonsense. So far there may only be about 100 of us and precious few in the UK, but i think this is 'what has happened' to that extent.

 

So...it's happen..ing - this is good, and a necessary step.

ETA - I think, personally, that it needs to go a lot further before we are no longer at risk of losing the gains, of BPS turning the tables on us, this is what they do, it's their job, their mission in life - until that risk is over, it hasn't "happened" yet.

Sorry if that's an unpopular view, or is seen as ungrateful, but......job not finished, it hasn't "happened" yet, it's been started but is a long way from finished. I am grateful for all the hard work that's been done, by many, many people, but, it's too soon to call it IMO.

 

They've paved us a road straight to hell with those "good intentions". And even if good intentions drive some of them to want to cure ME/CFS, it doesn't make up for shoddy methodology, the manipulation of data, and the spinning of results.

We don't just need good intentions. We need good science.

 

This should be posted as a response article