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

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.

 

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?

 

Bitter that they had to start treating the MS patients like human beings, and eager to find a new group of patients they could openly despise. Seems to explain the trauma experienced during most appointments that ME patients have with neurologists, anyhow

 

There should be a "like with bells on" button for this!

 

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

The rest of the conclusion about "prognosis for an improvement in symptoms" are still quite gloomy as the improvements are small

 

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.

 

"No one ever comes back to this restaurant cos I feed them so well the first time".

 

That makes his latest speil even funnier. "Ok then ignore that trial I was involved with if you don't like it I'll just tell you all the facts anecdotally".

 

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".

 

Reminds me of the American visitor who's comment after savouring my wife's cordon bleu cookery was 'Have you come across barbecue sauce - it's really excellent'. He wasn't invited again.