United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

MSEsperanza said:
I'm not on Twitter myself but if I were I would vote on Dr. Hammond's poll even if it's ridiculous.

Sadly, optics might matter here.



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https://twitter.com/drphilhammond/status/1429698085425459202
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This is ludicrous BS, because it sets up the premise that some public vote on what to do is legitimate in the first place ... it is NOT! And no one should be implying it is.
 
It may be that Hammond realises that for people like him it is a better strategy to let the guideline be published and make use of all the loopholes to carry on the same rather than make a big hoo-hah that just brings all the issues to people's attention.
 
Jonathan Edwards said:
It may be that Hammond realises that for people like him it is a better strategy to let the guideline be published and make use of all the loopholes to carry on the same rather than make a big hoo-hah that just brings all the issues to people's attention.
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He seems determined to sow as much confusion as possible and then preach kindness and plead his own ignorance. It's presumably a familiar routine. I am honestly disgusted, although I should be used to it by now.

Frankly reminds me of a homeopathic doctor I once saw (I couldn't really figure out what he did at the time, that is not how it was advertised). He smiled too.

I am disturbed by his characterization of his patients whose diagnosis he is undermining and for whom he is suggesting LP & activity management might "help" as "our young people".
 
Tom Kindlon said:
Dr Phil Hammond has started a discussion about graded exercise therapy.
Here are some extracts from the PACE trial manuals in a published letter of mine: https://www.researchgate.net/public..._in_CFSME_The_need_for_further_investigations

I suspect some people are calling paced exercise as graded exercise therapy
View attachment 14812

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Also:
From: Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
If intervention details are not present, it can be difficult for readers and reviewers to classify therapies correctly. In the PACE Trial, the GET intervention was guided by the principle that, “[p]lanned physical activity and not symptoms are used to determine what the participant does” (33); similarly “t is their planned physical activity, and not their symptoms, that determine what they are asked to do”(33). In contrast, in adaptive pacing therapy, “activity is planned and then modified in the light of its effect on symptoms"(33). If one looks at the exercise prescription used in the Wallman et al. (91,138) study from Australia, it appears perhaps more like the latter program: “on days when symptoms are worse, patients should either shorten the session to a time they consider manageable or, if feeling particularly unwell, abandon the session altogether” (138). Given the low rate of harms reported in the survey data for pacing in contrast to GET (Table 2), it may be that interventions that involve the principles of pacing may have lower rates of harms associated with them and should be analysed separately in reviews.
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https://www.researchgate.net/public...gic_EncephalomyelitisChronic_Fatigue_Syndrome
 
I wonder if Hammond is, inter alia, on a fishing exercise - Sharpe used to do this to gather evidence of trolling.

Also has the feel of a DARVO manoeuvre,
stage 1:
Deny issues (with clinics)

stage 2
Attack critics: especially easy if trolling occurs & reinforces long term narrative

Stage 3
Reverse Victim & offender: look at me I’m the good guy here working away looking after children and teenagers.

I sincerely hope I’m wrong!
https://metro.co.uk/2020/06/13/guid...ople-give-when-called-bad-behaviour-12847680/
 
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Perhaps I am not looking at this right.

Annoying as he may be, I think Hammond is not helping himself at all. Nor is Sharpe.

All of this is on open record & none of it will be deniable in the future.

The behaviour exhibited -sealioning or just being manipulative if you will- is not behaviour becoming either a psychiatrist or a paediatrician. A phrase I believe Sharpe is familiar with.

As for Hammond demanding diagnostic tests - well, if he & others like him were actually experts or interested in becoming experts in ME then they would have kept better records that could be fed back into research.

Frankly, his list of things to try is rather barbaric if he's including shoving vulnerable young children under cold showers and the like. Such an exhaustive list of things to try (probably with the usual poor record keeping) reminds me of those alterative practitioners who advertise multiple different treatments. Though they may be proud to have mastered so many courses all it really shows is that none of them work, because if they did they would just use that one.

To be honest, it's a bit chilling. Hammond is openly looking for carte blanche to test all sorts out on vulnerable & sick children. Smiling in the knowledge that the authorities will be in his side if the parents try to put a stop to his experiments.

Edit - spelling & typos
 
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MSEsperanza said:


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https://twitter.com/drphilhammond/status/1429698085425459202

This is so disingenuous!

Read the NICE guidelines and what pwME suggested in their responses as stakeholders

Don't take what individuals respond on your Twitter thread as in any way representative for pwME.
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Whose guidelines are we talking about? Are they NICE's or are they the Royal Colleges'?

The Royal Colleges are inserting themselves into the situation and being a drama queen because they aren't getting their way. Again we see the Appeal to Emotion Fallacy. Look at all the drama Phil is stirring up.
 
MEMarge said:
The overall impression I get from parents on ME Facebook groups is that they prefer to see Phil H, rather than Esther C as he does not push increasing exercise/activity as much, nor tell them off for not getting better.
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That sums of the state of things doesn't - they choose the "least harm" option.

Not that I judge them at all for that. That's been the best most of us could hope for in our interactions with healthcare in the last 3 decades or so - the least worst option.

If that isn't a damning indictment then I don't know what is.
 
Invisible Woman said:
Perhaps I am not looking at this right.

Annoying as he may be, I think Hammond is not helping himself at all. Nor is Sharpe.

All of this is on open record & none of it will be deniable in the future.

The behaviour exhibited -sealioning or just being manipulative if you will- is not behaviour becoming either a psychiatrist or a paediatrician. A phrase I believe Sharpe is familiar with.

As for Hammond demanding diagnostic tests - well, if he & others like him were actually experts or interested in becoming experts in ME then they would have kept better records that could be fed back into research.

Frankly, his list of things to try is rather barbaric if he's including shoving vulnerable young children under cold showers and the like. Such an exhaustive list of things to try (probably with the usual poor record keeping) reminds me of those alterative practitioners who advertise multiple different treatments. Though they may be proud to have mastered so many courses all it really shows is that none of them work, because if they did they would just use that one.

To be honest, it's a bit chilling. Hammond is openly looking for carte blanche to test all sorts out on vulnerable & sick children. Smiling in the knowledge that the authorities will be in his side if the parents try to put a stop to his experiments.

Edit - spelling & typos
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Hammond,
In such a poorly understood condition, the best approach is to tailor support and rehabilitation to the individual. At our clinic, we allow young patients to take rest breaks during a 90-minute initial consultation, and give them time and space to tell us about their illness and how it has affected their life, what matters most to them and what they hope to get out of treatment...."
Did anyone note that 90 minutes sessions are de rigour & what he utilitses ( for children) with a few 'rests" thrown in???!!..... "


Being a former teacher of Special Needs adolescents, even normal health ones can have a very short attention span ........ males particularly....

'Average attention spans work out like this:1
  • 2 years old: four to six minutes
  • 4 years old: eight to 12 minutes
  • 6 years old: 12 to 18 minutes
  • 8 years old: 16 to 24 minutes
  • 10 years old: 20 to 30 minutes
  • 12 years old: 24 to 36 minutes
  • 14 years old: 28 to 42 minutes
  • 16 years old: 32 to 48 minutes'
 
MSEsperanza said:
Found it:

"The key challenge for those living & working with #MECFS & #LongCovid is

"how can we teach & help people to safely manage their own energy levels, so they can live a life of meaning & purpose without making themselves very ill?"



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https://twitter.com/drphilhammond/status/1429730062618800128


Suggestion:

Better don't teach anything to anyone if there is no evidence on which your teaching can be based.

That's the first thing to acknowledge if you want to help.

Plus: How about reading the NICE guideline draft, the expert testimonies and patient organization's responses? Recommendation: The response from S4ME and Jonathan Edwards' expert testimony.

There are many more 'constructive suggestions' on how supportive care could look like on S4ME, see e.g. here (members only)
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He spent the last 24h being schooled about his alleged area of expertise, including by patients who are new at this. WTH does he think that he has anything to teach? If anything we have far more to teach them, he just made it clear he wouldn't even pass an intro quiz.

But as usual, this is about them. "What is it that I can do?", rather than "what is needed?" The simple truth is that moving forward, people like Hammond have no role to play, they are the failure we need to correct.
 
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"
Tuller wrote in Trial By Error, Continued: A Follow-Up Post on FITNET-NHS

"As part of her media blitz for the FITNET-NHS launch, Dr. Crawley was interviewed on a BBC radio program by a colleague, Dr. Phil Hammond. In this interview, she made some statements that demonstrate one of two things: Either she doesn’t know what she’s talking about and her misrepresentations are genuine mistakes, or she’s lying. So either she’s incompetent, or she lacks integrity. Not a great choice." Dr. Crawley either made an "unfortunate mistake" or a "deliberate untruth" when she convoluted two comparison groups in the study; one group went on with FITNET and the other did not yet she put the groups together as all going on with FITNET. She also stated: "Now, you know, you can pick and choose how you redefine recovery, and that’s all very important research, but the message from the PACE Trial is not contested; the message is, if you want to get better, you’re much more likely to get better if you get specialist treatment." Dr. Tuller notes this is at serious odds with the facts.[6] "
 
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