Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

[garcia]

Patronising sod, made my blood boil.

Did Jen know she was being set up I wonder?

He was doing that classic doctor (/ male in a position of power) thing of not actually listening but just umming when she was speaking. It felt like an NHS doctors consultation at times (except about 4 times as long!). I also felt it was really bad form not to have watched the film in its entirety before conducting the interview. I mean he is a doctor who claims to work with ME/CFS patients. You would think he would find the subject matter of the film at least interesting enough to watch the whole film, but he "came back late from a gig". Clearly his own stand-up career is more important that the lives of the ME/CFS patients he purports to care for!

p.s. That interview would have been an ideal place to bring up Karina Hansen and the psychologization of ME patients in general. I wonder what "Dr Phil's" response to that would have been? He says he only saw the first half of the film, which is conveniently just before the Karina Hansen bit! Part of me wonders if that was deliberate.

 

[Cinders66]

A problem I have with dr Phil and Crawley is that they only speak from their perspective at their CFS NICE clinic for kids. I realise that's their expertise it's a narrow focus. Also criteria are crucial, NICE is fatigue , post exertional fatigue OR malaise and at least one other symptom. That's pretty vague

So literally anything objective is intentionally disallowed? Do they give any reasons for that apart from words they made up for this specific situation (i.e. 'this is a behavioural intervention, what this means depends on what would suit us in any given context')?

I think they are trying to keep one wing focused on mainly cognitive activity and pacing /GAT and one focused on exercise. However only the exercise wing seem to be getting advice on Heart rate monitoring. Given what we know I think it's unethical for kids not to be getting the info we know on heart rate, aerobic vs aerobic Exercise as part of their activity management if they are still engaging in physical activity, exercise and possibly increasing that.

 

[Londinium]

I’m still to listen to the interview but Dr Hammond has written some stuff elsewhere (‘ME cluster bomb’ in Private Eye) on ME that strikes me that he’s somebody who’s deeply bought into the BPS explanation but who is gradually, and uncomfortably, starting to reconsider those views. It’s slow progress but detectable, IMHO.


Interestingly his follow up article (I think) was one in which he discussed all the other problems he sees with patients in his ME clinic (anorexia, bullying etc) that suggest again that a lot of ME referrals actually suffer from misdiagnosis of other medical problems.

 

[Philipp]

I think they are trying to keep one wing focused on mainly cognitive activity and pacing /GAT and one focused on exercise. However only the exercise wing seem to be getting advice on Heart rate monitoring. Given what we know I think it's unethical for kids not to be getting the info we know on heart rate, aerobic vs aerobic Exercise as part of their activity management if they are still engaging in physical activity, exercise and possibly increasing that.

Okay, I guess I see what they are trying to do then. And I also probably see why they may be going to fail to deliver something worthwhile: If one wants to measure 'general' activity vs 'structured' exercise, it is difficult to keep the two apart, especially when dealing with prepubescent kids or an elderly population (the younger the kids, the more they get bored by structured training and don't want to do it, while random activity might involve running around - conversely, in the elderly you can sometimes give them good workouts with what would be warmups in other populations). My experience from training people back in the day also tells me that increasing exercise tends to decrease non-exercise activities (you are less likely to go for a walk if you already spent time at the gym on any given day, just like you are less likely to read a book in the evening for leisure if your entire day consisted of cramming for an exam in law school.)

This makes it very important to get the cohorts right and state beforehand what the hypothesis is you want to test in order not to conflate things if one wants to end up with an interpretable finding. The people involved in all those creepy trials with the manipulative acronyms have repeatedly shown that they are either unwilling or unable to do so in a comprehensive manner.

But this is straying a bit far off topic if we were to continue in this direction, so maybe we should leave it at that for now.

 

[Cinders66]

Okay, I guess I see what they are trying to do then. And I also probably see why they may be going to fail to deliver something worthwhile: If one wants to measure 'general' activity vs 'structured' exercise, it is difficult to keep the two apart, especially when dealing with prepubescent kids or an elderly population (the younger the kids, the more they get bored by structured training and don't want to do it, while random activity might involve running around - conversely, in the elderly you can sometimes give them good workouts with what would be warmups in other populations). My experience from training people back in the day also tells me that increasing exercise tends to decrease non-exercise activities (you are less likely to go for a walk if you already spent time at the gym on any given day, just like you are less likely to read a book in the evening for leisure if your entire day consisted of cramming for an exam in law school.)

This makes it very important to get the cohorts right and state beforehand what the hypothesis is you want to test in order not to conflate things if one wants to end up with an interpretable finding. The people involved in all those creepy trials with the manipulative acronyms have repeatedly shown that they are either unwilling or unable to do so in a comprehensive manner.

But this is straying a bit far off topic if we were to continue in this direction, so maybe we should leave it at that for now.

Good point about cutting to compensate in other areas.

Yes you're probably right. I was just giving context given that dr Phil kept saying they were having success with exercise. Then when I looked up the protocol of the research it was worse than I realised. Fortunately jen conveyed a lot to counter the exercise is good message

 

[Philipp]

Yeah, I just wanted to say if we want to seriously start to take apart the magenta stuff we probably should have that discussion over in the respective thread so it isn't 'buried' here and overtakes the discussion of the interview. It is good that you brought it up here for context . It is still amazing every single time to see how bad those people are at their purported jobs from every possible angle you look at it.

 

[anniekim]

/QUOTE]

[QUOTEHe did concede that more research is needed in general, and also mentioned the severely affected in particular.]

He v wrongly claimed the more mild to moderate who can get to clinic benefit from clinic's GET, only severe don't benefit. Not true. Pretty sure too saying his clinic reduce exercise or activity is only initially, he omitted followed by GET/aim to increase activity. @MEMum, did u share that about Bath clinic? Sorry if not u.

Edit: or was it @UKmum?

2nd Edit:

I listened briefly again to PH's radio interview with JB and realised I got something wrong. PH didn't lie as he did say after they reduce exertion they then gradually increase activity. Someone has told me that Crawley has said in talks Bath clinic reduce activity initially and then use planned increases in exertion. If true, not pacing. Ah, just seen Cinders66 post, confirms true.

 

[JoanDublin]

Here is a patients comments about that interview. This gives those of you who dont understand how awful things are in the UK, some idea of the minefield of stepping into it without proper ammunition and knowledge.

https://twitter.com/i/web/status/922131116735303680

 

[CFSTheBear]

In my opinion @JoanDublin pieces like that are always undermined by claims that aren't particularly rigorously referenced. What this allows is the very valid points within the synopsis to be dismissed because someone is adding in stuff that they can't actually support with evidence.

It's my understanding that we have many potential biomarkers, but none that definitively point to "yes, you have this illness".

In addition, using the term retrovirus with ME/CFS is also quite unsubstantiated, despite some people reporting successful improvement in symptoms when on anti-retroviral medication.

I also wasn't aware that Jen was taking two anti-retroviral drugs, though I could be wrong. I was aware that she took Valcyte as well as some other treatments.

I don't think it should be Jen's job to take people on in this situation. She has already effected bigger change and awareness than years of advocacy through her film. The average listener will likely not hear someone who's standing up to someone who's part of the problem if she did go in all guns blazing, they'll hear someone spouting slightly fringe viewpoints to a respected doctor. And from that, no one is converted, and ME/CFS patients are easily pigeonholed as catastrophising and militant. She didn't back down, she continued to state her points plainly and rationally.

 

[JoanDublin]

I don't think it should be Jen's job to take people on in this situation.

I disagree and I think Jen would too. Jen has made herself into an international ambassador and advocate through her crowdfunding of the film within the community and through the Millions Missing Campaign. Of course it is her job to take people on in these situations. In any event I'm glad to see she has taken him on via Twitter with some very good responses.

See this thread

https://twitter.com/i/web/status/921810495568580610

 

[Yogi]

http://forums.phoenixrising.me/inde...ce-better-data-event.55443/page-3#post-928495

http://forums.phoenixrising.me/inde...ce-better-data-event.55443/page-3#post-928499

Hopefully Jen gets it and will challenge Phil Hammond and Esther Crawley further

https://twitter.com/i/web/status/922495029192556544

 

[Grigor]

Is there any proof of this statement? The Dutch FITNET researcher told me the same in an email. Over 90% of the kids had PEM. Yet if you look at their website nobody talks about PEM only about how tired they are. And how great cbt was.

https://twitter.com/i/web/status/922016934580948992

 

[Countrygirl]

@Grigor . I suspect what is important is their definition of PEM. If it is just an increase in 'fatigue', which it may be, then that is not PEM.

Someone needs to ask Dr PH to define PEM.

 

[Philipp]

@Grigor . I suspect what is important is their definition of PEM. If it is just an increase in 'fatigue', which it may be, then that is not PEM.

Someone needs to ask Dr PH to define PEM.

Oh come on, as if they wouldn't just lie about it when pressured. Or at the very least have a recruiting process of 'So, you say you're tired all the time? You must feel even worse after exerting yourself? Allrighty then, box ticked' and then claiming that all their patients have textbook PEM because their questionnaire said so.

And even if their patients did actually have textbook PEM and true ME (which I doubt but whatever), with the way they gather data on how 'good' their CBTs are (or torture the data afterwards by being statisticomancers) they'll always be able to claim their stuff works, given the standards they accept (..or the way they literally redefine words when they feel like it).

 

[Yogi]

Thanks to Spoonseeker

It asks some really common sense blindingly obvious questions to Phil Hammond. The fact that Phil Hammond does not understand such basics and makes so many inconsistencies clearly shows he has trying to deceive us and lies through his teeth.

A (Second) Letter to Dr Phil Hammond
https://spoonseeker.com/2017/10/30/a-second-letter-to-dr-phil-hammond/

 

[Keith Geraghty]

They dont need PEM in the FITNET study protool - run by this group so why would they need PEM to be diagnosed in clinic but not in a trial - Phil Hammond needs to explain that ?