If anyone ever wondered why ‘Jonas’ chose to make his complaint about Dr. Sarah Myhill to the GMC ‘anonymously’, then they are now being answered by the extemist wing of the CFS/ME activist movement.
Before I start though, let us look at the meaning of the word ‘anonymous’ as it is used here. Dr Myhill’s supporters seemed to think that this meant the GMC was acting on the basis of an unsigned letter whereas in fact they always knew who he was. The complaint was anonymous in that Dr Myhill did not know from whom the complaint had originated. Some also argued that she should be allowed to ‘face her accuser’, a view that would have merit if he had been making allegations about something she had said or done to him but in fact his criticisms were about medical misinformation on her website – which could be viewed by the Fitness to Practice Panel themselves. Input from ‘Jonas’/Stuart Jones was not required.
For reasons best known to themselves, the GMC chose to reveal his identity to Dr Myhill anyway, which resulted in a world of grief for him. I should point out that there is no reason to believe that Dr Myhill has had anything to do with this, the evidence points to CFS/ME extremists, who were well represented amongst her supporters who had turned out for her FTP hearing. His identity was tweeted and retweeted fairly rapidly. From here we have “Mr Stuart Jones is Jonas, The Big Girls Blouse…”. It went down hill from there.
They had been ranting on the now-deleted ‘überthread’ and elsewhere about this being an attack on CFS/ME sufferers whereas in fact, as ‘skepticat’ points out:
The complainant, who posts on the Bad Science forum under the name of ‘Jonas’, started a thread over there with the announcement that he’d made a complaint about a range of recommendations Dr Myhill makes on her website. These, Jonas argued, are contrary to national guidance and safety limits and so may place people at risk. The recommendations are in connection with nutritional supplements, heart disease, contraception, breast cancer diagnosis and vaccines. None of this complaint appears to be about treatment relating to CFS, with the possible exception of the vitamin supplements.
This belief may have arisen due to conspiritorial thinking by the activists: the owner of the Bad Science website is Dr Ben Goldacre, who once worked with Dr Simon Wessely who is hated by the extremists because (according to them) he says either that the causes of CFS are psychological not physical, or that it is a sham illness. From this they seem to have deduced that all Bad Science posters are there to do Dr Wessely’s bidding.
Consequently, because Dr. Wessely is a target of theirs, anyone who in their eyes is one of his minions becomes a target. From this it is clear that they have a cached copy of the überthread and intend presenting it as evidence to the HPC panel considering Stuart Jones’ fitness to practice. I don’t suppose it will be the version that shows them making insulting and/or provocative statements to get a reaction, then, on getting one, editing their posts. Not that it really matters as ‘Jonas’ did not rise to the bait. Others did but this can only be seen as relevent if you see Bad Science posters as being united in a campaign against those with CFS. The tone of comments both here and here suggest that other posters could become targets when they fail to achieve their objective against Stuart Jones. Fortunately, the GMC does not know who they are.
Similarly, the fact that this thread was on Ben’s site is evidence for them that he agrees with what is being said. In fact he banned one poster (not Jonas) for making a particularly unpleasant comment about a doctor (not Myhill) and instituted a moderation process for the forum.
It is clear that Stuart Jones is owed an apology by the GMC because if it was not for them the extremists would not have an easy target for their viciousness. One thing on which I do find myself in agreemernt with the Myhillites; the GMC is not fit for purpose.
Tags: CFS/ME, Dr Sarah Myhill, health activism, Stuart Jones
Letting Off Steam 
November 26, 2011 at 4:13 pm |
Agreed. What an insane situation. My recollection of that ‘überthread’ is that Jonas said nothing that wasn’t true and supportable.
It’s hard to imagine a nastier and more vicious bunch of saddoes than those on the threads you link to.
November 27, 2011 at 5:36 pm |
Jonas’s comment on Bad Science saying he complained “anonymously, for reasons that will become clear” sounds pretty prescient now.
November 27, 2011 at 5:58 pm |
The ME/CFS extremists are actively dangerous. One of them has already been convicted of criminal harassment against Simon Wessely. I got a taste of this when I tried to stop them savaging him on Wikipedia: the assertion that I am a stooge for him and so on, when actually all I was doing was enforcing Wikipedia’s policies (more here: http://www.chapmancentral.co.uk/wiki/Wesselygate). I would counsel anyone not to go near that lot unless you are prepared to suffer real-world attacks and harassment.
The real irony is that if they’d left my original rewrite, which simply toned down the worst excesses of their ranty version, it would have been much more to their liking than what we eventually ended up with. They are, I’m afraid, rather binary in their outlook.
November 27, 2011 at 11:04 pm |
Indeed.
In fact one is tempted to think that some posters on that ME/CFS forum have merely provided irrefutable evidence that what they imagine Wessely says about them is entirely true – ie that some are psychiatrically ill.
November 28, 2011 at 4:26 pm |
Kind of related: http://www.badscience.net/forum/viewtopic.php?f=3&t=16659&start=4825#p702043
Without in anyway reducing the resposibilities of those who operate or contribute to M.E/CFS blogs and forums, I do think it’s important to recognise that M.E/CFS is a subject that attracts all sorts of people with a whole range of agendas, and that not all those people are themselves directly affected by M.E/CFS. I’d say it was ‘significant’ that some of the more extreme behaviour comes from those who claim to be parents or carers and the ‘craziness’ surrounding M.E/CFS may be similar to the ‘autism’ cranks, who are not themselves autistic but whose psychopathology seems driven by an anxiety about autism.
December 17, 2011 at 12:15 am |
Yes, absolutely. ME/CFS is a problematic condition: we actually don’t know if it’s a single condition, a syndrome combined form multiple conditions, or a small number of conditions commonly diagnosed as one due to similar symptoms. As with autism, at least the UK has less of a problem than the US with self-diagnosed activists. It would be wrong to belittle the suffering of patients, and as far as I can see Wessely stepped back form the field precisely because he saw that objections to his involvement, being a psychiatrist, were causing obvious psychological distress to a subset of the community. It’s a shame they lack the same self-awareness and self-analysis, but I suppose not very surprising.
November 30, 2011 at 2:56 pm |
Is there any way we can help Jonas though? I and others too complained to the GMC about the website in question and believe Myhill has asked the GMC for copies of documents relating to that complaint. It seems grossly spiteful and unfair of them to single him out.
November 30, 2011 at 3:44 pm |
I honestly believe that because Jonas also initiated the discussion about it on Bad Science, and the tenuous connection between Ben Goldacre and Simon Wessely, Jonas has become a proxy target for Wessely in the minds of the Myhillites.
December 5, 2011 at 12:26 am |
Jonas is due before HPC hearing later this month. Supporting submissions are being made on his behalf.
If you want to help, pm him through the BadScience forums.
December 22, 2011 at 7:50 am |
Have any of you stopped to look at the big picture?
The reason why patients go to ‘alternative’ doctors like Dr Myhill and criticise those who are percieved to be leading the science in the wrong direction (Dr Wessley) is because the condition itself is poorly understood. The reason it is poorly understood because there has been very little research done. Good science will push out the bad, but very little science has been done so far.
The fact is that in terms of societal disease burden (eg DALYs), CFS is actually one of the most neglected diseases in terms of research funding. In Australia, there has only been one research study involving CFS patients funded by the National Health and Medical Research Council in the last 5 years. When comparing the ratio between disease burden and NHMRC funding, we find it is underfunded by a factor of 35 times compared to Asthma and 48 times compared to Otitis Media for example. There is a similar pattern in the USA and the UK.
You see patients with all conditions don’t tend to care what sort of method is used to treat them, so long as it works. CFS patients are no different.
The problem is that there are no treatments for CFS that actually reduce disability in terms of restoring to normal levels of neuropsychiatric functioning or activity levels. Nor are CFS patients who receive cognitive behavioural therapy going back to work as a result.
http://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf (This is what happens in practise – almost 600 patients, less are working at the followup interval after receiving CBT/GET based rehabilitation therapy.)
The most promising so far was the recent Rituximab study, but this is yet to be replicated. http://www.ncbi.nlm.nih.gov/pubmed/22039471
Anyway, the lack of good treatment options makes them seek out ‘alternative’ solutions. They soon learn that these approaches don’t work either, but by then they’ve already spent their time and money.
Instead of fighting over the little things, perhaps we should be focusing on the big things. Having an efficacious treatment for CFS will improve the lives of almost a million Americans and save the economy tends of billions of dollars a year. If we are to tackle this, then we need to increase research funding to levels on par with other diseases at the very least. This might mean that any of you who are scientists with relevant skills should move into the field.
December 30, 2011 at 6:55 pm |
People with relevent skills can only move into the field if research is funded.
And even if it is, researchers might worry that if they get results certain activists don’t like, they will be on the receiving end of the same sort of invective as was Simon Wessely.
December 30, 2011 at 10:35 pm
They will have to be dedicated and have some bollocks then. Galileo had a tough time. But a scientist in search of the truth will be able to rise above the criticism of a few militants with access to the internet.
There are already some really good scientists out there who are trying to untangle this mess and they don’t waste time moaning to the press.
December 31, 2011 at 1:57 am
You make a good point about research funding.
It if wasn’t immediately obvious from my post, I am a CFS activist and I can tell you that from speaking to current researchers, Simon Wessley’s experiences are the exception, not the norm.
Why is Simon Wessley treated differently? To put it mildly, he spins results in the media and fails to engage properly with the community. If he communicated properly, he wouldn’t have these problems.
There are researchers in the USA who have also conducted CBT/GET trials (Dr Jason, Dr Friedberg), but they are still respected. Why? Because they don’t spin their results, rather, they say what the data shows (that these treatments don’t necessarily reduce disability, but help patients manage better with the functioning they have) and they both engage with the community.
Seriously, does anyone think controversy between patients and researchers is unique to CFS?
http://www.reformedms.org/ms-ccsvi-news/ms-patients-take-protest-parliament-hill
December 29, 2011 at 7:43 pm |
Well said Andrew. It is better to see the big picture than to become bogged down in the trivia. I am glad that this medical condition is now being looked at more closely in the UK and the US.
When I say ‘medical condition’ I am thinking more of the original Myalgic Encephalomyelitis rather than the umbrella term Chronic Fatigue Syndrome and, sadly, ‘fatigue’.
It may be that ‘Jonas’ has achieved something entirely different from his original intention by making some very very intelligent people look at this subject.
Even if one of them becomes involved in a positive and objective way, he will have done the patients a great service ultimately.
December 31, 2011 at 2:23 pm |
[…] subjects covered included GMC incompetence in releasing Stuart Jones’ identity to Sarah Myhill and the CFS/ME activists which resulted in a retaliatory complaint about him to the […]
January 8, 2012 at 9:28 pm |
Of couse, ‘Jonas’ owes Sarah Myhill an apology … tosser!
January 9, 2012 at 8:07 am |
Interesting this. When you wrote it you specifically stated that you had no reason to believe that Myhill was involved in the rather petty complaint to the HPC.
Now of course, we know that Myhill probably instigated the complaint, and was certainly a prime mover behind it, and even gave evidence at the Jones HPC hearing.
January 24, 2012 at 5:13 pm |
Please have a look at these utube videos on ME.
As someone has said, there needs to be more research done on this condition. It is crazy that we are condeming 1000’s of people to the scrap heap. Myhill has to be on to something and even she doesnt fully know why. More research is needed. I am 100% sure ME is NOT a psychological condition.
I am not an ME sufferer by the way.
February 6, 2012 at 8:46 pm |
Nor am I an ME sufferer-but I do understand why people look for alternatives-It is only common sense.
And when ‘sceptics’, [arent these labels absurd?] make comments like this:
‘In fact one is tempted to think that some posters on that ME/CFS forum have merely provided irrefutable evidence that what they imagine Wessely says about them is entirely true – ie that some are psychiatrically ill.’
then I really despair at the petty mean spirited point scoring that has NOTHING to do with the issues-
When I am in a doctors office for 5 mins and walk out with a prescription that gives me horrible side effects-or am misdiagnosed for years because the doctors dont listen to your symptoms-
don’t join up the dots or are just ignorant of a whole raft of lifestyle issues but wont admit it, then yes, surprisingly I will look at alternatives- weird but true!
By the way how is it possible that the average doctor who has the bare minimum of nutritional training feels that they are then qualified to dismiss or comment on nutritional choices?
I have never understood this, perhaps someone can explain-why does that not make the average MD a ‘quack’ as soon as they give reccomendations on nutrition?
February 11, 2012 at 3:15 pm |
@aqua
You wrote:
“And when ‘sceptics’, [arent these labels absurd?] make comments like this:”
If you find the label absurd, why are you using it? Why not just refer to the commenter by his name, instead of pigeon-holing and sticking a label on him? Especially if you’re going to stick inverted commas round it – what work are they doing on this label you’ve decided to use?
“then I really despair at the petty mean spirited point scoring that has NOTHING to do with the issues-”
Having read the links in question, I beg to differ. Many of those commenters do come across as unhinged; if this observation makes you despair, I hate to think how the disgusting comments linked to make you feel. The behaviour of CFS/ME activists and their consequences is very much one of the issues raised by this particular blog post, whereas your personal experience of doctors and what they say about nutrition, has nothing whatever to do with anything being discussed here.
January 6, 2014 at 5:46 pm |
[…] his blog post entitled, ‘The GMC owes Stuart Jones as apology‘, jaycueaitch makes the obvious point that Jones did not identify himself on the Bad Science […]