Private Eye - ME Cluster Bomb

[JohnM]

Print is too small for my tired old eyes to read. Does anyone have a transcript. Last time MEA put one up on their website. Maybe they will again. Is it any good?

@trishrhymes
Article transcribed and attached .. I think it is accurate, and hope helps some for those tired old eyes of yours

I wonder who that doctor was?
The one who trawls the internet looking to rebut any criticism of The BPS model with the same standard answers that dont address any of The issues ? It did read awfully familiar.

As posted on Private Eye Columnists page .. with M.D

"All interventions – drug or non-drug – can cause harm as well as benefit, and there are a significant number of patients with severe CFS/ME who are not helped by any current interventions. Research needs to focus on those most severely affected, and we all need to focus on believing in ME. It is a proven and classified neuro-immune disorder, from which some people recover and some don’t. Yet...” (the bolding is my emphasis)

I think the BPS adherents have developed a central repository (I leave you to decide whereabouts this is located) for the provision of such non-responses, as evidenced yet again in this article - the Yet... that is the BPS modus operandi.

So love the ambiguity in the ".. the need to focus on believing in ME", not!

Thought I might highlight a few more excerpts which may be of interest .. (again with my own bolding)

That cognitive behavioural therapy (CBT) is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.

ME campaigners don't ignore the fact the CBT and graded exercise therapy (GET) have been shown to work in randomised controlled trials and are endorsed by lofty scientific institutions such as the Cochrane Collaboration and NICE; but they do challenge the science.

Remind me again which other 'treatments' are offered on the NHS .. thought so! The use of the phrase 'any benefit' in this context is as meaningless as saying "kills up to 99% of germs" and the like so beloved of advertisers, and perhaps I still misunderstand the concept of a RCT?

For the PACE researchers to accept any such re-analysis would require it to be published in a credible peer reviewed journal with independent analysis that is free from bias. It is a long and complex process.

Insert your own expletives here ..

M.D. agrees that the split between mind and body is unhelpful, and there are indeed physical, psychological and social elements in all illnesses, either as causes or consequences.

..

Some patients have CFS/ME, some have chronic fatigue likely to be due to other causes, and many have a mixture of both.

..

Sometimes it isn't easy to figure out precise causes for the fatigue, even in 90 minutes.

How to muddy the waters, and how wonderful that we can all now get a 'triple diagnosis' in 90 minutes for whatever ails us

Most young patients who are able to engage in treatment recover in time.

Insert your own expletives here ..

The rest of the article is pretty much an implicit advertisement for the need to undertake the FITNET-NHS and MEGA studies; of the latter, it seems all those supposed 'omics studies to be undertaken at some unspecified time in the distant future, are reduced to a study of genetics (perhaps article word limits were a constraining factor here) and "drug and nutritional treatments" whatever they may be, or "trying and trialling the non-drug treatments we already have."

To keep with the marketing analogy above .. "Do you want your old life back? Try our new and improved online CBT and GET courses, relearn how you can eat well, sleep better, and exercise more in 8 weeks or less, no drugs needed!"

Research data must be shared for others to fairly analyse and use.

Fairness and use to be judged by whom exactly?

But ultimately, individual patients decide what works for them, and what dosen't.

For some "Yes", and I made my choice sometime back .. no prizes for guessing which

For some "No" ... the latter especially if you are a child who does not respond positively to non-drug treatments it seems, and all because you have naughty parents who reinforce your false-illness beliefs.

Apologies yet again with the long post, and thanks again for your company here on PR ... helps more than I can say.

 

[Chrisb]

@JohnM

I feel that the Private Eye sub-editors did MD a disservice. If you refer back to the first article the final sentence is "Yet." MD's meaning was wholly different to that which appears in the Private Eye Columnists page to which you refer. (EDIT They have turned an adverb into a conjunction.)This would presumably have been wholly beyond the control of Phil Hammond.

It is interesting to see how people can come to completely different interpretations. Personally I thought the third paragraph of the latest article was an excellent, subtle explanation of the problem. It all hangs on the "But they do challenge the science."

Perhaps I am merely seeing what I want to see.

 

[JohnM]

@JohnM
I feel that the Private Eye sub-editors did MD a disservice. If you refer back to the first article the final sentence is "Yet." MD's meaning was wholly different to that which appears in the Private Eye Columnists page to which you refer. This would presumably have been wholly beyond the control of Phil Hammond.

I was initially hesitant to include that paragraph from the commentators page, as I did not have access to the full description, if indeed there is one? I did so because, I think it was a useful to contrast M.D.'s recognition that ME/CFS (can't bring myself to use CFS/ME ) is a "proven and classified neuro-immune disorder" with what he said in his latest article.

@JohnM
It is interesting to see how people can come to completely different interpretations. Personally I thought the third paragraph of the latest article was an excellent, subtle explanation of the problem. It all hangs on the "But they do challenge the science."

Perhaps I am merely seeing what I want to see.

It does indeed provide a subtle explanation of the problem .. a very poorly worded paragraph, which can be interpreted in different ways due to the ambiguity of the opening sentence -

"ME campaigners don't ignore the fact the CBT and graded exercise therapy (GET) have been shown to work .. endorsed by lofty scientific institutions such as the Cochrane Collaboration and NICE ".

Perhaps it would have been more accurate to state ME campaigners don't accept that CBT and graded exercise therapy (GET) have been shown to lead to any objective and lasting improvement in health for patients, as shown in those very same 'randomised controlled trials' endorsed by those lofty scientific institutions? Or perhaps also include a recognition that CBT/GET can lead to further harm as M.D recognised in an earlier article?

Perhaps I am also seeing what I want to see @Chrisb

 

[Jo Best]

He is so trying to cover all bases for self-protection now that patients and a whole shed load of scientists from around the world are showing the emperor (and empress?) he works for are wearing no clothes. I don't buy the 'blame the doctors' line any more than I accept patient-blaming. This is completely disingenuous. Doctors rely mostly on what they are taught at medical school and what they learn from medical journals, in-service training/continuing professional development and of clinical guidelines such as NICE (which is relatively recent, founded in 1999 and the guideline for CFS/ME was published in 2007).

The question is, which doctors "initially dismissed a physical basis for CFS/ME"?? Which doctors have consistently pushed the somatoform (morphing into the biopsychosocial model) over recent decades? What about the doctors that knew ME was an organic disease from the start, including microbiologist Betty Dowsett, and of course, Melvin Ramsay (whom I believe was on record on saying that he would agree to a change of name from ME-itis when the name poliomyelitis was changed, I think this is in the records at Kew, happy to try to find source if anyone wants it).

On the plus side, I picked up that he was saying that patients "challenge" the science as opposed to "ignore" it, but so does an increasing number of scientists, including Jonathan Edwards in UK, and even the results published in the first full paper of the PACE trial in 2011 weren't as good as they were spun to be, without seeing the raw data, and he knows all about spin with his many years of experience in media and entertainment (Private Eye, TV shows) so he could have have helped spread the word all these years in his non-combative style. Why now..?? (rhetorical).

 

[Jo Best]

What about the doctors that knew ME was an organic disease from the start, including microbiologist Betty Dowsett, and of course, Melvin Ramsay (whom I believe was on record on saying that he would agree to a change of name from ME-itis when the name poliomyelitis was changed, I think this is in the records at Kew, happy to try to find source if anyone wants it).

Speaking of Melvin Ramsay, hope this tangent is ok - news from Solve ME/CFS of the first awards from The Ramsay Award Program - includes the IiMER/UCL team working with Christopher Armstrong (they were all at BRMEC6 in June along with Zaher Nahle) - http://solvecfs.org/metabolic-analy...ic-encephalomyelitischronic-fatigue-syndrome/

 

[Esther12]

The claim that protocol specified outcomes need to be published in a peer review journal before they could be accepted by the PACE researchers is clearly BS. The PACE researchers have the data to double-check for themselves, and have done for 5+ years!

The problems already identified with the Larun Cochrane review of GET make them seem a less than lofty organisation to me.

 

[user9876]

The claim that protocol specified outcomes need to be published in a peer review journal before they could be accepted by the PACE researchers is clearly BS. The PACE researchers have the data to double-check for themselves, and have done for 5+ years!

The problems already identified with the Larun Cochrane review of GET make them seem a less than lofty organisation to me.

They can of course look at the data. One of the things that has struck me is the lack of curiosity and application of critical thinking in those supporting PACE. They simply don't seem to question.

 

[Valentijn]

They can of course look at the data. One of the things that has struck me is the lack of curiosity and application of critical thinking in those supporting PACE. They simply don't seem to question.

I'm not sure if it's because they're unable to understand science, or because it just gives them an excuse to ignore the problems with PACE. But it comes across as "we can only trust the scientists and the journals, not the general public and certainly not patients." Very patronizing and dismissive.

 

[Jo Best]

And another thing.. ;-) He says that patients challenge the science but fails to mention that QMUL spent some £200k of public money trying to prevent those patients (and other researchers) from seeing the raw data.

 

[AndyPR]

His two pieces featuring ME are now available to read on his website;
http://www.drphilhammond.com/blog/2016/12/20/private-eye/private-eye-medicine-balls-1432-updated/
and
http://www.drphilhammond.com/blog/2016/12/20/private-eye/private-eye-medicine-balls-1433-updated/

 

[Barry53]

And another thing.. ;-) He says that patients challenge the science but fails to mention that QMUL spent some £200k of public money trying to prevent those patients (and other researchers) from seeing the raw data.

And that statement also blithely ignores the fact that many real scientists and statisticians refute that PACE warrants inclusion as part of "the science".

 

[Esther12]

Added some promotion of MEGA to the second one.