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

rvallee said:
He's really spending his Sunday showing he is completely oblivious to his own self-proclaimed area of expertise, unaware that there is a wide range of severity and that it is wildly fluctuating. Just amazing. Like an AIDS specialist being sincerely dumbfounded that it's caused by a virus.

Odds are non-zero of this being used as a story showing how ungrateful we are, completely missing the point that being ignorant of the basic features of this disease has always been the main problem. I guess that's what the "can't teach old dogs new tricks" is really about. He's been practicing and teaching this for years, he can't accept that he is oblivious to it, can't learn that he is completely wrong in how he understands this, from patients, no less. Hell, even relatively new long haulers get the stuff that he is blissfully unaware of.

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Seems to me like a man who knows exactly what he's doing to be honest. I don't feel that these people lack intelligence. He's twisting and turning every opposition to his point of view on his arse, trying to make himself look like the sensible one. We know that he isn't making any sense, but I don't think he's tweeting for our benefit rather that of other onlookers.
 
On the face of it, the Sunday Times article is the author’s work in which he expresses his personal opinion with the best intentions. I see instead a carefully crafted article with a very familiar narrative of beleaguered good doctors, who only want the best for their patients. I suspect it is part of a PR campaign which started with the resignations from the committee, then the BMJ article, and which will continue, perhaps intensify during the pause. Here is my analysis:


1. Framing the pause as a patients vs professionals dispute.
"We need to stop quibbling over guidelines"
"This suggests patients and professionals don't all agree."

2. Suggesting ME is not a real disease:
Suggesting it is not real by saying it is real.
"... acknowledging their condition is real"

Why would you even question whether it is real or not? Do patients with asthma or arthritis or diabetes need acknowledgment that their condition is real?

Raising controversy over classification:
"... which the WHO, controversially to some, classifies as a neurological disorder."

Would anyone mention the WHO classification for any other disease?

3. Emphasising the psychological effects by placing them before the physical effects.
"They can feel isolated, alone and unbelieved. Unsurprisingly, about a third of young people we see suffer from significant anxiety or depression. Psychological distress is not the cause of their condition, but it is too often the consequence. Many find the psychological support we offer them extremely helpful, even if it is not a cure."

You could say this about any chronic disease.

4. Framing ME as unique in its heterogeneity.
"With such a heterogenous group in terms of cause, severity and recovery, it's difficult for Nice to come up with guidelines that capture all this variety and a one-size-fits-all treatment plan. So let's just admit and accept that."

This is a false argument. You could say that about any disease. It is like saying ‘Let’s not have a NICE guideline for arthritis because some people just have painful hands while others are unable to walk, some benefit from knee replacement and others don’t.’

"and treat patients on a case by case basis"

All patients with any disease are treated on a case by case basis - that’s the doctors job!

5. Blaming patients for their misperceptions.
"'Graded exercise therapy' - one of Nice's sticking points - as described by some patients may sound awful, but it's not something I recognise"


6. Implying that disagreements result from immaturity.
"We all need to grow up, work together and embrace differences of opinion and strategy."

7. Suggesting alternative therapies are OK for ME
"I have met people with ME/CFS who are desperate for answers and experiment with low-dose naltrexone, anti-virals, acupuncture, mitochondrial supplements, nutritional supplements, yoga, meditation, mindfulness, solution-focused hypnotherapy, the Lightning Process, the Perrin technique, an anti-inflammatory diet, cold showers and more. We need to know if any of these work, and in what circumstances."

For what other disease would a paediatrician suggest alternative therapies? Dangerous and unethical IMO, especially for a paediatrician.

8. Ends with a reasonable plea - surely only an unreasonable person would disagree?
"Let’s start by publishing the Nice guidance, even if we don't all agree on all of it. What we do agree on is that this is a real, deeply unpleasant physical illness that blights the lives of many, and long Covid makes better research and treatments an urgent priority."

Except that research and treatments should have been an urgent priority for decades
 
Solstice said:
Seems to me like a man who knows exactly what he's doing to be honest. I don't feel that these people lack intelligence. He's twisting and turning every opposition to his point of view on his arse, trying to make himself look like the sensible one. We know that he isn't making any sense, but I don't think he's tweeting for our benefit rather that of other onlookers.
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He is obviously doing it on purpose and so I did not want to keep replying, but did keep doing so in case someone looked at it with any scientific background or experience to be able to see that what he is doing goes against good practice and is completely unscientific. I am concerned by the number of people on twitter who were taken in by him, so I stopped. Perhaps I am overestimating the onlookers.
 
Solstice said:
Seems to me like a man who knows exactly what he's doing to be honest. I don't feel that these people lack intelligence. He's twisting and turning every opposition to his point of view on his arse, trying to make himself look like the sensible one. We know that he isn't making any sense, but I don't think he's tweeting for our benefit rather that of other onlookers.
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He is coming across as reasonable and listening, but making ME guidelines look like a matter of opinion and debate, rather than evidence. Possibly also trying to collect some negative responses to use for the 'patient activist' narrative.
 
Yvonne said:
I see instead a carefully crafted article with a very familiar narrative of beleaguered good doctors, who only want the best for their patients. I suspect it is part of a PR campaign which started with the resignations from the committee, then the BMJ article, and which will continue, perhaps intensify during the pause.
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If this was not the case there was no way he would have spent Sunday on twitter especially not with the substance of what was said. I hope people who are otherwise allies in this can be alerted to his behaviour and motivations. It's obvious at this point but I didn't get the sense that people understood what he is doing, so it appears to have been somewhat successful. (?) I am frankly horrified and disgusted that he tried to frame saying that kids and young people with mild ME don't have ME, and carrying on ignoring evidence, as "kindness", and appears to have the sympathy of most.
 
Yvonne said:
He is coming across as reasonable and listening, but making ME guidelines look like a matter of opinion and debate, rather than evidence. Possibly also trying to collect some negative responses to use for the 'patient activist' narrative.
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I really feel there should be some pushback from organizations as he was in effect wilfully misrepresenting the position with regard to for example testing for ME/CFS, and also saying that maybe we should say mild ME is not ME. He kept repeating these points manifestly in bad faith. The "testing" and "maybe we can diagnose them with something else" tweets really need pushback as it's so manifestly wrong and should be so to anyone who knows what they are talking about.
 
The Hammond tweets and articles nicely sum up our problems.

He says that we should be investigating any and all treatments because some people use them but never mentions that different groups have found problems with our cellular respiration that need large, well designed studies to work out. Then we could look for treatments so no one goes for the likes of LP again.

He makes much of PEM without any understanding of it. In ME PEM includes immune symptoms like swollen lymph glands and sore throats not just more fatigue. I had this even when I was mild and did not experience fatigue. There are also physical symptoms from cognitive exercise and vice versa. If he asked his patients about that it would be a first step in distinguishing patients at risk from exercise.

He could learn the strange symptoms of ME we experience that distinguish it from fatiguing disease. Does he ask about vision problems, sudden paralysis or lack of temperature control?

His problem with which patients have ME could be solved easily if he stopped being so interested in the psychology and spent a while learning about the disease from the patient's perspective. In fact if he truly wants his questions answered we are a polite forum who would welcome and discuss anything they wanted with sincere seekers of answers.
 


Code: 
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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A strategy would be helpfully posting links to the expert testimony from JE, stating his credentials, and links to the evidence review and anything else useful from the draft release and ask him to engage with those, not individual patients on Twitter who have not been involved in the process and/or may not be fully informed. Hammond’s Twitter thread is not really directed at patients, but his followers. He is using and manipulating patients to get other clinicians and his public onside.

it won’t hurt if this is done repeatedly IMO.

Hope I’m being clear , posted in haste. (And brain not too good today)

Eta - sorry everyone already knows this. he’s trying to distract and shine a spotlight on the patients so if I was on Twitter I’d drag it back to the evidence. (And with all the years he’s been working in a clinic, he sure is avoiding the evidence.)

edit typo

edit to add. I’ve made assumptions in this post about Hammond’s motivations in his Twitter thread referred to here while emotional about the NICE guideline ‘pause’. I realise that was unfair of me, and I don’t know what his motivations are. My apologies to Dr Hammond.
 
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MSEsperanza said:


Code: 
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 indivuals respond on your Twitter thread as in any way representative for pwME.
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Apart from this Twitter poll being ridiculous, I thought he actually referred to another question he tweeted -- have to find that one now.

Edit:
It was a question about what to offer pwME if not GET and CBT ("constructive answers please!") Can't find it now.

Edit 2: Found it -- posted here.
 
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MSEsperanza said:
I thought he actually referred to another question he tweeted -- have to find that one now.
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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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Code: 
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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MSEsperanza said:
(I have the feeling, the main purpose of Dr.Hammond's recent twitter activity is trying to undermine the definition of ME that includes PEM as a core symptom.)
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I also suspect he just wants to muddy the waters so that people new to all this and trying to understand, will get confused and not pick up on the info that highlights just how hopeless he is.
 
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