2011-08-24 12:32:04When we've fixed climate, maybe we can start 'Skeptical Chronic Fatigue Syndrome'
John Cook

john@skepticalscience...
124.177.173.40

I had no idea but apparently there's a whole movement of chronic fatigue syndrome conspiracy theory peddling extremists, threatening scientists, submitting FOI requests to universities, etc:

http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

I thought all the nutters were directed towards us but apparently there is plenty of nuttery in the world to go around.

2011-08-24 21:25:22
Dikran Marsupial
Gavin Cawley
gcc@cmp.uea.ac...
139.222.14.107

not the best way of arguing that ME/CFS doesn't sometimes have a psychological component!

I blame the internet.  In the past crackpots had far less opportunity to gather a coterie of followers that would reinforce their crackpottery.  With the advent of blogging and search engines there is an efficient and convenient method for crackpots to get together and mutually reinforce eachothers crackpottery - all they have to do is sit in front of a computer and type. 

Fortunately the internet also provides a way of countering this, as demonstrated by SkS.

2011-08-24 21:54:58
Paul D

chillcast@googlemail...
82.18.130.183

I mentioned this a few weeks ago in a post.

2011-08-24 21:56:17(joke)
nealjking

nealjking@gmail...
84.151.36.123

What we really need to do is to find a convincing story that CFS is actually caused by excessive CO2.

Then these over-active CFS people (do they ever get tired?) can spend their days and nights hounding the oil-company operatives.

2011-08-24 22:30:36Oh my
Anne-Marie Blackburn
Anne-Marie Blackburn
bioluminescence@hotmail.co...
212.139.94.149

If we start tackling all the attacks on science, we'll all end up bonkers. Fact ;) Evolution, HIV/AIDS, etc. - it would certainly keep us busy. Not that we need it of course.

2011-08-24 23:16:38
Alex C

coultera@umich...
67.149.101.148

I recall this saying:

"Don't argue with idiots.  They'll drag you down to your level and beat you with experience."

Whether we take this advice to heart in all aspects of our dealings with climate "skeptics," perhaps a modulated saying could sum up the apparent problem with CFS:

"Don't argue with CFS radicals.  They'll drag you down to their level and beat you."

And personally, as per Anne-Marie's comment, I'm not all too keen on going bonkers at such a young age ;-)

2011-08-24 23:48:07Speaking of bonkers...
John Hartz
John Hartz
john.hartz@hotmail...
98.122.98.161

I'm already there -- but I'm also 68 years old and retired.

"Full steam ahead, damn the torpedos!" should, in my opinion, be the SkS motto.

2011-08-25 00:59:26
perseus

owlsmoor@googlemail...
188.220.205.42

Whilst aggression towards medical professionals or anyone else is always unacceptable, it is also useful to look at the controversy before jumping on the bandwagon and absolving the medical profession of any blame for this mess. 

http://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome

Early attitudes to this problem were very unscientific, and unbelievableby frustrating to CFS/ME sufferers.  My own experience of a similar undiagnosed illness fully explains the controversy. Doctors placed immense pressure on the individual to admit they were depressed, then they would send you to a psychiatrist without any experience of CFS/ME, who would be happy to blame the problem on any psychological issue they could dig up. Since patients were being told there was no physical problem whilst continuing to feel very ill this generated the very psychological problems they were accusing them of which were very convenient for absolving them of time intensive patients. 

Despite knowing many people with this and closely related conditions I am unaware of any aggressive behaviour towards Doctors.  However, Doctors had immense power over vulnerable individuals since any disagreement could mean they were struck of the National Health Service altogether without them having to justify why.  This atitude created anxiety in some patients, which of course further served to confirm their diagnosis. The bottom line was that ME/CFS was being used as a dumping ground for disorders which couldn't be treated. This behaviour by the profession was unfortunately not isolated and certainly unethical.

"It is suggested that a context of contested causation may have serious negative effects on healthcare for individuals. Contested causation may erode patient-provider trust, test the provider's self-assurance and capacity to share power with the patient, and raise problematic issues of reparation, compensation and blame"http://www.ncbi.nlm.nih.gov/pubmed/12194900

 

2011-08-25 02:46:42
Dikran Marsupial
Gavin Cawley
gcc@cmp.uea.ac...
139.222.14.107

I've had CFS/ME for 20+ years (when it is really bad I can barely walk - fortunately that doesn't happen too often), and it is true that it was viewed as largely psychosomatic for a long time; however that doesn't mean it does not have a psycological component (although it may be an effect rather than a cause), in my view the researchers looking into psychological issues are making a useful contribution.  I rather doubt that CFS/ME is actually a single illness and probably has multiple causes, which for some may be psycological, for others purely physical and others a combination of both.Those with a purely physical form are potentially doing a disservice to those with (partly) psycological forms by insisting (without solid evidence) that it is a purely physical illness.  Part of the problem with CFS/ME as a dumping ground is that there are no clear diagnostic criteria, the medical profession has no real idea what causes it or how to treat it, and it is normally a "diagnosis of exclusion".

Having said which, patients shouldn't object to being asked to see a psychiatrist as a possible route of treatment anymore than they should object to being sent for a sigmoidoscopy just to rule out the possibility of bowel cancer - in the absence of a clar diagnosis it is well worth investigating. There is an irrational stigma attached to any illness involving the brain that ought to be resisted (depression can also have a purely physical cause - a change in brain chemistry with age/illness/chronic stress etc. and isn't necessarily something a psychiatrist can help with).  As well as reforming the doctors in dealing with such issues, we also need to reform the patients as well so that they are not so defensive about the suggestion they have a mental component to their problem.

2011-08-25 17:25:35
perseus

owlsmoor@googlemail...
188.220.205.42

I generally agree Dikran. I recently voluntarily attended a follow up to a pain management course which was run by some good psychologists, but they made no attempt to pretend that psychology was the main cause, but merely the best way of living around an illness until a cure can be found.  Unfortunately this was not the case in the early days.  My impression was that the medical professions attitudes have changed, that's why I am surprised to see this upsurge in patient anger. 

I was eventually advised by one GP to stop running after he examined my neck Xray, and after this my condition did improve substantially.  A close friend of mine diagnosed with ME for 20 years is now showing signs of Multiple myeloma which is a long term blood cancer which can linger for a long time before showing up.    

The problem is that these avenues were closed off to us in the 90s in the UK.  I was like one of those wrongly convicted prisoners desperately seeking an appeal only to come across one bigoted judge after another attempting to protect the profession.  It was a horror story, thankfully all that seems to be over with now.

Glad you have improved as well.

 

2011-08-27 09:51:50
adelady

amgnificent@gmail...
124.171.85.132

perseus, DM, I do think these CFS/ME people would do well to look at the current moves in pain management.  My (nurse) daughter did a PM course and came home with a heap of recommendations and a workbook for me - very similar to CBT workbooks - with the added bonus of lots of recommendations about managing pain/activity. 

Would work very well, suitably modified, for all but the worst cases of CFS I'd think.  

Doesn't work so wonderfully well for me.  I'm too stubborn to follow the STOP! any activity at the first twinge - I gotta get whatever it is done if I think it's important.   (And then I sit down and grumble about becoming allergic to the medication that gave me 18 blissful, magical pain-free months.    Not the best strategy, but it's my very own.) 

2011-08-29 06:52:47
perseus

owlsmoor@googlemail...
188.220.205.42

 adelady

Sorry I didn't see your post.  A big problem with pain management courses is that several groups with totally different problems are lumped together, so different management strategies are needed for each.  For some they are doing too little activity; for me it was far too much, and that was the solution in my case at least. Graded exercise wasn't relevant. Everyone has to be treated individually. 

One of the more unexpected benefits of courses and meetings is that you get to speak with other patients.  The best treatments I have found was via a patient albeit an x medical professional. They seem better informed!  If you wish to contact me my email is Owlsmoor@googlemail.com 

2011-08-29 18:40:41
Dikran Marsupial
Gavin Cawley
gcc@cmp.uea.ac...
139.222.14.107

@perseus Indeed everybody ought to be treated differently (as it is likely it isn't just one specific illness); for me physical exercise is vitally important.  Regular (fairly strenuous) exercise is what keeps my symptoms under control when I am well, and graded exercise therapy is what I need when I have a relapse (as happened in 2009 - I am still working to get fit enough again to play cricket).  I have often wondered whether part of the problem is that we (as a species) are not well adapted to modern civilisation, involving as it does for many of us working in an office, long term stress and a very sedentry lifestyle.  Perhaps this leads to long term neuro/endocrine changes which causes CFS in some - this would explain why GET works for many (but not all) as it is simply a simulation of a more pre-industrial revolution lifestyle. 

"Graduated Exercise Therapy" - trust the medical profession to give a name to the idea of "exercising as much as possible - but don't overdo it"!  It would be good advice for most of use CFS sufferer or not.

I'm trying to get up the enthusiasm to go to the gym - not that easy when you are tired all the time...

2011-11-22 08:55:37
Andy S

skucea@telus...
66.183.185.188

http://blogs.nature.com/news/2011/11/researcher_arrested_over_missi.html

2011-11-22 10:06:50
skywatcher

andycasely@hotmail...
122.107.164.176

Very interesting comments.  I've had a mild form of CFS for over a decade - most of the time it doesn't stop me being very active indeed, but occasionally it flattens me for weeks at a time.  Mine started after a bout of glandular fever, and only shows up periodically, with sometimes multiple years between bouts.  I had no objection to being checked out for depression, though I came out showing no signs at all of depression - the only places I scored high was where I was frustrated due to a lack of physical and cognitive energy!  I saw the doctor's diagnosis sheet, and one possible cause was listed as "academic over-achievement"  I kid you not!  Not that it applies in my case...  Perseus' and Dikran's comments are spot on - there may be a number of causes, and it does no harm to check for all plausible causes, so you have a better idea of what you are combatting.  The nuts who can't accept that do much more harm to themselves and other than they do good.  I remain grateful that what I have is mild, and most of the year it doesn't get in the way at all.  You have all my sympathy Dikran.

2011-11-22 14:07:22Add to this one?
jyyh
Otto Lehikoinen
otanle@hotmail...
85.78.21.128

CFS was the untreated ulterior chronic neuroborreliosis? ... No, I'm not going in there.