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

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.

https://twitter.com/user/status/1429533305221877775

 

I have tried not to do too many tweets at him as I don't want it to be twisted, but he seems determined to carry on and has been tweeting misinformation all day. Why?

He seems to be pushing an agenda pretty hard. He just claimed "compassion" and "kindness" to the patients and then ignored the features of their illness and the evidence - including refusing to say that severe patients have the same illness as milder patients so that he can continue to practice whatever he likes on the latter. He said he did something like GET on young patients "gently" and "consensually". (!)

It is cruelty with a smiling face.

 

NICE hasn't defined ME as a condition where 'exercise invariably causes harm'. Most of us haven't seen the final version but the draft spent a lot of words explaining it is about staying within ones personal exertion capacity (or 'energy envelope'). Hammond clearly hasn't even read the draft guidelines. It just makes our (PWME) case stronger - the professionals delivering 'treatments' to us have no idea.

 

He really outed himself as clueless today. Before he seemed to partially get it. Textbook example of "It's better to keep your mouth shut and appear ignorant than open it and remove all doubt".

 

He seems worse than clueless. His most recent tweets seem very dangerous to me. I am afraid he does know what he is doing.

 

EEEEEEWWWW!

 

How many things can you get confused about in one sentence.

No it is not being said that exercise, of all forms, invariably causes harm; it is that GET and its derivatives can cause harm, in the in the form of significantly reduced capability compared to pre-therapy. Pacing is a form of exercise for pwME that aims to avoid harms, but it does not necessarily avoid PEM ... PEM is not in itself a form of harm, it is part of what pwME have to live with. But if an inappropriate form of exercise led to far worse PEM than before, then that would be harm, but PEM itself is part of what distinguishes ME.

He either really doesn't understand, or he does but is out for effect and doesn't give a damn about the rights or wrongs.

 

My thoughts exactly. Dampener on my weekend, that's for sure.

 

I wonder if Ben Marsh could comment ( also a paediatrician). Perhaps too controversial .

 

I've noticed he gets invited to speak on Times Radio quite a lot (not in relation to ME). I can't remember the subjects I heard him speak on but he never comes across as very bright and can be very irritating to listen to.

 

I do wonder if it is much more cynical than that. Maybe he understands perfectly but in order to protect self interests is playing to the crowd with guff that seems, to his fan base, to support what he does.

 

I agree. I am not sure he is onto a winner with his multiple tweets trying to say that the milder ME patients that he wants to "treat" need to be considered to have a different illness. I am hopeful that this will sound wrong to medics. Or we really have some serious problems.

 

Hence why most parents eventually learn that, at least in young children, after asking "did you brush your teeth?", you actually check. Because children want to please, can hardly tell right from wrong and do not understand why such things are important, or that there are grades of lies. It's not even malicious, but even with adults we've learned that everything has to be checked, like how many steps did you actually do yesterday, because we're really bad at this stuff.

The whole thing being applied to children is especially ghoulish. But hardly a surprise for someone who works a lot with Crawley.

 

I think he's saying that stuff because the person he's replying to is saying people with ME can't exercise (rather than a more qualified or nuanced statement about GET), which isn't true. What that person also says about biomed research showing that people with ME can't exercise isn't true either. There's some evidence of biological abnormalities that indicate an abnormal response to exercise, but does it show people with ME can't exercise? No.

When discussion about GET happens there's a few bits of bad reasoning that are rolled out, like the ones above, and I don't think they make people with ME look good.

 

But he is the so called specialist doctor, so should be correcting them with factual correct information. Which he doesn't.

Also moderate to severe ME patients often can't 'exercise' as just completing activities of daily living uses up all their available energy/capacity, so the person may well be speaking from their own experience.

 

Code:

https://twitter.com/drphilhammond/status/1429540281091858434

I'll try to respond to the second part of the question.

As far as I'm aware there is no evidence that fatigue associated with different illnesses generally is the same type of fatigue or has the same cause or will respond to a certain treatment in the same way.

There are different types of fatigue and fatigability and different patterns. Different types of fatigue can also co-exist and add up.

Plus, fatigue / fatigability is only one of many symptoms of ME.

Independent from the type and cause of fatigue: If people can manage to exercise 5 minutes and that can be improved to (still only) 15 minutes without any payback, in which way could this help people in managing daily activities?

That PEM is not well researched and has different forms doesn't mean that, in general, it is not distinguishable from both immediate fatigability and normal, physiological reactions to exercise.

The delay with which PEM occurs varies. PEM still is a distinct pattern.

I think whereas PEM is a core symptom of ME, 'deconditioning' is not a mandatory feature of the illness in its less severe forms, but can be a consequence of living with the illness for the more severely affected. I don't know if there are reliable figures that support that last sentence. If I remember correctly, it was shown in clinical trials that not all pwME are abnormally 'deconditioned'?

So treating patients with different illnesses and different types of fatigue in your clinic is only wrong if you don't assess symptoms properly and don't use evidence-based treatments based on that assessment.


(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.)

Edit for clarity (added a 'not').

Edit 2 to add: The delay with which PEM occurs varies.