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

Discussion in 'UK clinics and doctors' started by Dx Revision Watch, Aug 22, 2021.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    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
     
    Helene, Kirsten, EzzieD and 18 others like this.
  2. Ariel

    Ariel Senior Member (Voting Rights)

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    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.
     
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    Wow this is dim
     
  4. Simbindi

    Simbindi Senior Member (Voting Rights)

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    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.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    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".
     
  6. Ariel

    Ariel Senior Member (Voting Rights)

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

    JemPD Senior Member (Voting Rights)

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    EEEEEEWWWW!

     
  8. Barry

    Barry Senior Member (Voting Rights)

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    upload_2021-8-22_21-41-31.png
    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.
     
    Last edited: Aug 22, 2021
  9. Ariel

    Ariel Senior Member (Voting Rights)

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    My thoughts exactly. Dampener on my weekend, that's for sure.
     
    MEMarge, Daisy, Louie41 and 3 others like this.
  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    I wonder if Ben Marsh could comment ( also a paediatrician). Perhaps too controversial .
     
    MEMarge, Daisy, Louie41 and 7 others like this.
  11. Adrian

    Adrian Administrator Staff Member

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    It is interesting to see the confusion but certainty in what he is saying. If he represents a typical doctor then we have real issues.
     
    Moosie, Wits_End, Kirsten and 24 others like this.
  12. Simbindi

    Simbindi Senior Member (Voting Rights)

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    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.
     
  13. Barry

    Barry Senior Member (Voting Rights)

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    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.
     
  14. Ariel

    Ariel Senior Member (Voting Rights)

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    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.
     
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
    Helene, Kirsten, EzzieD and 15 others like this.
  16. petrichor

    petrichor Senior Member (Voting Rights)

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    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.
     
  17. Simbindi

    Simbindi Senior Member (Voting Rights)

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    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.
     
  18. Sean

    Sean Moderator Staff Member

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    Exactly. If you cannot predict responders then you don't have a robust understanding, and we all know where that leads.

    ----------

    https://www.s4me.info/attachments/fine-there-is-no-disease-jpg.14799/

    That is beyond disgraceful. It's literally 100% wrong, and in the worst possible way.

    Also very inconsistent in its strong emphasis on symptom monitoring and being single minded and focused on the bodily sensations. That is the complete opposite of the theoretical assumption/assertion that our underlying problem is being too concerned with bodily sensations.

    And they do this to children. :mad::mad::mad:
     
  19. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    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.
     
    Last edited: Aug 23, 2021
  20. JohnTheJack

    JohnTheJack Moderator Staff Member

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    This tweet by Phil Hammond needs to be seen alongside the one by Sharpe and the admission of harm by Goddard.

    For over 30 years we have been told that GET is not exercise, that it succeeds through incremental increases and that there is no evidence of harm.

    They're clueless. It's a complete muddle, as many of us have been saying all along.

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

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