(Daily Telegraph) “How I became a target for the ME militants” by Dr Michael Fitzpatrick

Yep…

 

I wonder...

Was the intention in publishing this article today to try and create a furore amongst patients to see if they will take the bait and make threatening remarks on some public forum? It does seem to be deliberately provocative. But if that was the intention it needed to be published without a paywall.

 

You could be right ... wanting to demonstrate the 'truth' of the title of the article.

 

I agree; this seemed more about sowing confusion than anything else, and to give people a vague background narrative base from which to ignore the issue

 

So 250,000 people in the UK with "chronic fatigue". Interesting that instead of lumping all these individuals in with the many, many others with cf, which is often the aim of the BPS campaigners: to blur the boundaries, and make ME/CFS disappear, this community has been distinguished from all others with cf.

However, GET/CBT for the ME/CFS population, mixes this group into the population with psychological issues such as depression. So at once separate, and yet the same as all others with idiopathic cf. Sometimes it's difficult to keep up with the reasoning.

 

Strange that he felt the need to do an Op-Ed in the British Journal of General Practice making claims about the etiology and treatment of ME when he didn't even know who probably the most influential researcher in it was at the time. Edit: it's unclear to me whether he was saying he didn't know of Wessely or didn't know him personally

I think it should be remembered that accusing someone or suggesting that someone is being influenced by or working on behalf of someone else or a group of people can have the effect of making people with ME a bit conspiratorial and crazy, as often people have these views just because they are their personal views, which are also generally commonly held. This is just a general comment about him being called a "Wessely Lieutenant", not specifically referring to anything else

 

The only genius that Wessely displays is being able to land a seemingly unending stream of sinecures, government grants, and honours without possessing merit of any kind.

 

Articles like these seem like a desperate attempt to provoke a negative reaction from ME patients.

 

Yes, I was thinking this almost reads like what I would write as a parody of BPSers.

 

Interesting that the article goes from attacking people with ME and their advocates to lauding the researcher(s) that the author finds ideologically sound without anything by way of concrete information or actual argument between the two.

Even if people with ME were irrational activists that does not mean our arguments are a priori wrong, just as professorships and knighthoods does not make the opposing argument incontrovertible fact. It seems that not only is the author seeking to argue from a fictitious dualism of the good and the bad, where the good is a favourite idol and the bad is people with ME, he is seeking to do it by personal attacks, making people with ME and their allies the object of BPS militant trolling.

It seems to me that the author is doing just what he is accusing people with ME of doing.

 

Desperation is setting in.
It must be difficult to be losing control of the narrative after so long.

 

It seems a dangerous tactic to remind everyone of organophosphates in sheep-dip. They were withdrawn because of safety fears, as I recall.

No doubt people would have been paid to fight the industries' corner.

 

And yet they will be treating people in their clinics for conditions having the same personality defect.

 

Correct me if I'm wrong, but I believe a knighthood has already been bestowed in this category. Please, no duplicate entries.

On the other hand, this citation is certainly food for thought:

I just might be open to the argument that Sir Simon is the Art Garfunkel of his field.



[Ironically the group broke up over a dispute about top billing. ]

 

I really don't understand why all of these people come out of the Revolutionary Communist Party/Living Marxism. What is the ideological connection? I seems if you go so far to the left you can end up entering the far right. The extremists on either side are obsessed with 'freedom' over everything else but what else do they actually believe in??? Themselves maybe. (Not expecting answers to these questions, I suspect it doesn't really make any logical sense.)

 

Personal advancement?

 

Don't know whether this has been posted before:

[My highlighting in bold]

Part of a response from a 17 July 2017 FOI request submitted by Barbara Jones:


https://www.whatdotheyknow.com/requ...sts&utm_medium=link&utm_source=whatdotheyknow

(...)

[Request 3]. The names of the experts NICE consulted.

NICE holds the names of the topic experts who were asked for their opinion on the relevance of the published guideline. For your information the topic experts are from the following fields: neurology (2), psychiatry (3), paediatrics (1), patient representative (1). However, we consider that the names are exempt from disclosure under 2 sections of the FOIA. We explain these exemptions and why we have applied them below.


Section 40 – personal information

Section 40 provides an exemption from the right to know where the information requested is personal data protected by the Data Protection Act. Personal data is data that relates to a living individual who can be identified from that data. The names of these individuals is clearly personal data.

Under section 40(2) we are withholding the names of the topic experts because we consider that to release it would contravene the principles of the Data Protection Act. In reaching this decision we considered whether disclosure would be fair to the individuals concerned, the consequences of disclosure, the reasonable expectations of the individuals and any legitimate public interest in disclosing the information.

NICE does not routinely publish the names of topic experts who contribute to the review process therefore the individuals had no expectation that this information would be made public. We wrote to the topic experts to ask them if they had any objections to their identities being disclosed to the public, and if so, what those objections were. Three of them were strongly opposed to their identities being made public in this context and one could not be contacted within the time available.

Reasons given include their experience, and that of other experts in the field, of being connected with this topic area. These included concerns about personal harassment, previous abuse and threats they have been subjected to when involved in work on this topic. We were sent a link to a news story from the Guardian describing threats and abuse directed at researchers and professionals in this field.

NICE is also concerned that disclosing the identities of the topic experts would have a significant impact on our ability to get experts to contribute to our work on this topic in the future. This point was supported by Mr Justice Simon in the judicial review that followed the publication of the original guideline. While Mr Simon was referring to guideline committee members in his judgement we consider that the impact would be the same if the identities of the topic experts asked for their opinion in the review process were made public.

When individuals are members of a guideline development group (also known as a guideline committee) their identities are publicly available on our website because the membership, as a whole, is responsible for the recommendations made. As described above, in the review process, the topic experts are asked for their opinion but the review decision is taken by NICE’s Guidance Executive whose membership is publicly available on our website.

As 3 of the topic experts expressed concerns over their identities being made public and 1 could not be contacted we consider that it would not be fair to make the remaining names public as this could have the effect of unreasonably focusing activity on these individuals.

We recognise the public interest in ensuring public authorities remain transparent, accountable and open to scrutiny. We also recognise that disclosure would enable individuals to understand decisions made by public authorities in more detail, however on balance we do not consider the public interest in disclosure overrides the interest in maintaining these individuals’ privacy.

We therefore conclude it would not be fair to disclose the information under section 40(2) of the FOIA.

Section 38 – health and safety

Section 38 states that information is exempt from disclosure if its disclosure would, or would be likely to

(a) endanger the physical or mental health of any individual, or

(b) endanger the safety of any individual


The topic experts, and other experts in the same field, have specifically referenced threats and harassment they have been subject to in the past, as described above.

We have also considered if some of this information is already in the public domain because of the individuals previous work in this or other fields. As 4 of the topic experts were also on the guideline committee, their interest in this field is already in the public domain. However, in the context of the review, consultation and the campaigning activity around NICE’s proposal, we consider that releasing the information at this time would create a direct link between the experts and the review proposal and would raise their profile. Therefore disclosure at this time is likely to increase the risk that these individuals would be targeted and that this could lead to additional harm.

Mr Justice Simon also referenced unfounded allegations made against guideline committee members and his judgement stated that ‘unfounded as they were, the allegations were damaging to those against whom they were made; and were such as may cause health professionals to hesitate before they involve themselves in this area of medicine. A perception that this is an area of medicine where contrary views are not to be voiced, and where scientific enquiry is to be limited, is damaging to science and harmful to patients.’

Given the volume and nature of the correspondence (enquiries, petitions, letters, activity on message boards, Freedom of Information requests) we have received to date we are concerned that the experts may be targeted individually by any campaign and that such activity would impact on experts’ wellbeing and on their and others’ willingness to contribute to the work of NICE in the future, especially when they are not part of the decision making body.

We can’t be certain that the release of the withheld information would put the individuals at risk but we consider that there is sufficient evidence to conclude that they would be singled out for harassment, intimidation and possibly threats of violence.

This exemption is subject to the public interest test. We accept that there is significant public interest in being accountable and transparent for the decisions we take and for individuals under understand how we make our decisions. However, NICE also has a duty to protect the physical and mental wellbeing of the individuals concerned.

In this case the makeup of the decision making body, [3]Guidance Executive, is already in the public domain. The review proposal is also publicly available and contains comprehensive discussion of the evidence including the feedback from the topic experts.

NICE operates openly and transparently. All of our guidance development processes are published in detail on the website. We believe the process and information on which the proposal is based is publicly available and subject to consultation. We consider that those with an interest in this guideline have sufficient information to be able to understand both the process and consideration of the evidence.

Given the concerns raised by the individuals and other evidence of previous incidents of experts in this field being targeted for harassment, including threats of violence, in the past we conclude that the public interest in disclosing the information does not outweigh the interest in maintaining the exemption in light of the likely risks to the health and safety of the individuals.

We therefore conclude it would not be fair to disclose the information under section 38 of the FOIA.

(...)

For full FOI request and full NICE response see:
https://www.whatdotheyknow.com/requ...sts&utm_medium=link&utm_source=whatdotheyknow

 

Were those remarks of Simon part of the ratio decidendi of his decision or purely obiter dicta? Was a case ever presented to the court to counter these arguments? It seems odd that a judge would opine so freely if no argument was allowed.