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

Tom Kindlon said:
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.
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I've no doubt that Alastiar's experience, gleaned as it is from highly constrained 15 minute consultations with a selected subset of patients, is way more valuable than the collective experience of us patients here on S4ME. We are way too "vociferous".

If you want to understand the lived experience of MECFS, don't ask an actual patient, guys! What would they know? Just ask Alastair!

Hey, just a thought, Alastair, but while you're thinking about how us "vociferous" patients might be biased, why not have a think about your own biases? How much do your hopes and desires to feel useful affect how you interpret patient outcomes? How carefully did you follow up each of your patients to establish long-term outcome? I hope you didn't take failure to continue treatment with you as a sign of recovery. Sorry to tell you this, but they probably stopped coming because it wasn't doing any good.

Here's an idea: why not collect some actual data - like finding out how many people got back to work or other full-time activities? How many are able to exercise freely without fear of relapse?

I also object most strenusouly to being treated like a child, who needs to be fed unrealistically positive information about my prognosis. I was told in 1990 by a doctor that "time to recovery varies, but the median time is two years". The truth is - and even dear Alastair is aware of this - many patients never recover. I had a right to know what the real stats were.
 
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Woolie. Well said. This guy is desperately trying to keep psych bias alive baiting our community. After what we have lived through he should be so lucky we are only “vociferous”. ME psych biased doctors interfered with ME research and treatment for years. Their names will stay on these ridiculous studies forever. That is a little bit of justice. Wonder how those psych biased doctors felt after MS was finally accepted as a disease?
 
Woolie said:
I also object most strenusouly to being treated like a child, who needs to be fed unrealistically positive information about my prognosis. I was told in 1990 by a doctor that "time to recovery varies, but the median time is two years". The truth is - and even dear Alastair is aware of this - many patients never recover. I had a right to know what the real stats were.
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The truth was a bit more gloomy hey? I guess he didn't bother reading any of the studies on prognosis.

https://www.ncbi.nlm.nih.gov/pubmed/15699087
Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0-31%)
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CONCLUSIONS:
Full recovery from untreated CFS is rare.
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The rest of the conclusion about "prognosis for an improvement in symptoms" are still quite gloomy as the improvements are small
 
Tom Kindlon said:
Although NICE guidelines and the PACE trial remain contentious amongst some patient groups
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I think he's a bit out of date, the PACE trial remains contentious amongst virtually all patient groups, many scientists and researchers, journalists, the CDC, everyone who's watched "Unrest", etc etc. Reducing all these concerned people to "some patient groups" is duplicitous to say the least.
 
Tom Kindlon said:
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).
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Yes, I've seen him use this 1/3, 1/3, 1/3 before. He says it's 'using best available therapy', but the same rough guide was being used in the 1970s as a prognosis without any intervention.

(Incidentally, I don't suppose anyone else has seen that 1970s quotation and could link me to it, could they? I've definitely seen it, but can't find it.)

Miller was involved in PACE, of course, so COI.
 
Despite a huge investment in biomedical research in the field of CFS/ME
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Yes, according to my calculations, the total spent on research into ME over the last 40 years is less than one month's spending on research into HIV/AIDS. Three-quarters of that is on psychosocial research, so effectively we are talking of one week's HIV/AIDS investment being spent over 40 years into biomedical research on ME. I can see why he thinks that is huge. But then, he thought the PACE trial was "the highest grade of clinical excellence".
 
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