Private Eye - ME Cluster Bomb

[Jo Best]

Good to keep our eye on the ball, after all, it's our lives and in some cases, our children's lives at stake here.
Important to remember too that we are actually helping the doctors who do understand (or starting to understand) by speaking out that we're not going to take this any longer, as it supports them against possible actions by the GMC, such as has happened to Nigel Speight this year (I know the restrictions were lifted but the investigation is still going on as far as I'm aware). As we know that Phil Hammond works with Esther Crawley and there was a spike in support for the Opposing MEGA petition in response to the FITNET media coverage, and now he feels confident to publish this article so soon after, I'd say the counter-petition has done a good job - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Barry53]

As we know that Phil Hammond works with Esther Crawley and there was a spike in support for the Opposing MEGA petition in response to the FITNET media coverage, and now he feels confident to publish this article so soon after, I'd say the counter-petition has done a good job - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Yes, I completely agree with that. I also suspect that beyond the petition itself there is an ever increasing groundswell of knowledge and discussion, that it is making it ever more difficult to ignore the voices of reason.

 

[Jo Best]

Yes, I completely agree with that. I also suspect that beyond the petition itself there is an ever increasing groundswell of knowledge and discussion, that it is making it ever more difficult to ignore the voices of reason.

The news of the parliamentary questions is a good example of that - https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18598481
The answers could be disappointing as per usual, but it shows that more people are waking up towhat's really going on. I'm looking forward to Dr. Ian Gibson's book too, Science, Politics and ME - http://www.investinme.org/IIME-Newslet-1508-01.htm

 

[Barry53]

The news of the parliamentary questions is a good example of that - https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18598481
The answers could be disappointing as per usual, but it shows that more people are waking up towhat's really going on.

Absolutely. These parliamentary questions (just the questions themselves) are a very good way to increase awareness amongst those who especially need convincing. Moreover the questions and answers are formally and publicly logged for posterity, and those providing the answers must surely realise that. Once you have the word "fraud" in a question, people may start to consider more carefully who it might be unwise to blindly support.

 

[ash0787]

" The challenge in the meantime is how to help the 250,000 CFS/ME patients in the UK who need it now. "

Instruct GPs on how to accurately recognize CFS within the first 3 monthes of it developing and distribute the lifestyle advice that people have learned through experience, this could be done through a website if it is too time consuming for the GP, stop wasting money on therapy programs which could be used for research which is greatly lacking, jesus christ its not that difficult ....

Also I want to live in a cold / dark / silent castle

 

[worldbackwards]

Also I want to live in a cold / dark / silent castle

Evergreen sentiment.

 

[Sean]

Absolutely. These parliamentary questions (just the questions themselves) are a very good way to increase awareness amongst those who especially need convincing. Moreover the questions and answers are formally and publicly logged for posterity, and those providing the answers must surely realise that. Once you have the word "fraud" in a question, people may start to consider more carefully who it might be unwise to blindly support.

Have a bunch of Likes.

Half the game is getting the basic idea injected into the discussion. Once it is acceptable to consider it, you can start placing the full evidence and arguments on the table.

One of the reasons the BPS school has been so successful in the UK is that they managed to make even considering that idea completely taboo.

Until now.

 

[AndyPR]

A follow up piece from Phil Hammond,

Image downloaded from this post on Facebook https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater

 

[trishrhymes]

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?

 

[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 .. in one word No! Same old equivocation and claims of recovery for existing treatments for many patients. :/

I should be able to create a *.PDF file for later, if no copyright issues if source acknowledged?

 

[AndyPR]

Click on the image Trish, you should then have the option in your browser to vary the zoom level if on desktop, if on mobile with touchscreen you should be able to use the pinch and "un-pinch" (whatever the opposite to pinch is) to zoom in and out.

 

[Cinders66]

It's rather foot in two camps. We need the biological looked at to accompany the effective CBT. treatment we already have. And an admittance that the kids with fatigue at the clinic might have lots of causes going on for that

 

[slysaint]

Sorry, he's still sounding like the 'acceptable' mouth-piece for EC to me.

 

[sarah darwins]

ffs. I was skeptical of the first article and more so now.

He acknowledges the disagreements, but kicks off with the only communication he quotes in the whole piece, from a doctor saying:

The one exception seems to be CFS/ME where any suggestion that there might be a psychological or social component leads to criticism.

Which, as we know, is EXACTLY the opposite of reality. When any of us who are too sick to have lives speculate that there might be a biological component to our illness we're dismissed by GPs and shouted down by the medical establishment.

He then goes on to state the Wessely position almost exactly, playing down the mind/body dichotomy and turning the whole thing into yet another bps fudge. Useless.

That's a wolf in sheep's clothing if ever I saw one.

 

[daisybell]

I disagree - I think he's gone further in this article. He's put the blame for the mess on doctors' shoulders - and he's clearly said that biomedical research is needed and that CBT is useful only to help deal with anxiety and living with chronic illness. I don't mind what he says about his clinical work - I imagine he does see a wide range of issues. I disagree with him saying that non-drug treatment should be tried, and I'm disappointed that he hasn't mentioned the possibility of harm from exercise.

But - overall, I think this reads like he's basically on our side, but is trying to say so whilst still keeping good relationships with the crowd he works with.

 

[BurnA]

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.

 

[Molly98]

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.

My thoughts exactly.

 

[TiredSam]

I disagree - I think he's gone further in this article. He's put the blame for the mess on doctors' shoulders - and he's clearly said that biomedical research is needed and that CBT is useful only to help deal with anxiety and living with chronic illness. I don't mind what he says about his clinical work - I imagine he does see a wide range of issues. I disagree with him saying that non-drug treatment should be tried, and I'm disappointed that he hasn't mentioned the possibility of harm from exercise.

But - overall, I think this reads like he's basically on our side, but is trying to say so whilst still keeping good relationships with the crowd he works with.

I agree with @daisybell's disagreement. In fact I thought it was a brilliant article.

He makes it clear that he has received "many" supportive letters, but "some" criticisms. He then expands on a typical criticism and proceeds to rebut it, in non-inflamatory language so that he doesn't alienate those who are uninformed / don't know what to make of it all.

He could have taken the easy path of quoting all the supportive letters, ranting a bit, and collecting accolades from sufferers / the converted, but I think he's more interested in converting the uninformed without alienating them.

"But it was doctors who initially dismissed a physical basis for CFS/ME" - couldn't have said it better, what more do we want?

I don't know if the irony of referring to treatments based on biological and genetic studies as "alternative" was deliberate, but I loved it.

He makes the distinction between chronic fatigue and CFS/ME, and concludes with "research data must be shared", "individual patients decide what works for them".

I think it was a great article, can't see anything in it to object to, and much in it to cheer about.

 

[Barry53]

I agree with @daisybell's disagreement. In fact I thought it was a brilliant article.

Ditto.

 

[Barry53]

but I think he's more interested in converting the uninformed without alienating them.

I think you could be right here @TiredSam. There must be a great many genuine but misguided/misinformed professionals out there (as M.D. concedes himself to have been), and they need to be sincerely won over to the truth, the whole truth, and nothing but the truth. Alienating such people will not help at all. Instead they can in turn become defenders of the cause, and help apply the sort of peer pressure that will become the key to making a real difference.