Spoonseeker blog: A (Second) Letter to Dr Phil Hammond

Andy

Andy

Senior Member (Voting rights)
Dear Dr Hammond – I was very pleased to hear about your vision for the way ahead regarding CFS on your 25 October BBC Radio Bristol show with Jennifer Brea (available on listen again at 2-21)

You said: “I remember when HIV first hit in the 80s in the UK … it was the patients themselves who learnt all the research and became very assertive and demanded the best care… I see that same movement happening with chronic fatigue. We need to unite people across the globe and use their wisdom and experience to get better research and that’s the route to an optimistic future, I think.”

I very much agree that this is the way ahead. We patients are doing our best to move things along this path. Unfortunately “becoming assertive” in the way that has been so successful for HIV campaigners is being interpreted by some health professionals as ‘harassment’. I’m glad you do not share this view. We are not trying to be difficult for the sake of it. All we are trying to do is to help uncover the truth about this illness which devastates so many patients’ lives.

With this in mind, I wonder if you have the time to answer a few questions which arose from your interview with Jennifer Brea. You were kind enough to respond when I wrote to you about a year ago and any response you can make again now would be very much appreciated.
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Read more at https://spoonseeker.com/2017/10/30/a-second-letter-to-dr-phil-hammond/

ETA: Formatting of the quote.
 
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Thanks to Andy for sharing my post. Apologies re formatting. Not intended. Due to shortcomings WordPress app, which I had to use on my tablet because my desktop was being repaired. Have tried to change the format now my PC is back but it won’t let me! If Sasha or anyone else reading this is having problems, you could try viewing in landscape and stretching out as far as possible which may give larger print and possibly two columns which should be easier.

No word yet from Dr Hammond. I am not optimistic. He tends to duck the difficult questions. Sometimes he sounds like he’s genuinely frustrated at the situation and wants to help more of his patients, but at others he just seems to be aiding EC in spreading confusion. After hearing that Radio show, I was left thinking: if he really wants to distinguish between different types of patients, why doesn’t he just do it?
 
Hi @Spoonseeker. Delighted to see you here. I always appreciate your blog posts.

Good luck with getting a response from Dr Hammond. I tried on Twitter to suggest he use 2-day CPET, and to clarify whether he was advising pacing or GET. No response. As you say, he only responds when it suits him, and muddies the water with patients who don't have ME.
 
Many thanks for the welcome greetings! Well done for getting this place together. The chances are that I shan't be as active here as I would like, as eye pain is one of my main M.E. symptoms unfortunately – which is kind of ironic in view of the above. Thanks for the HTML suggestion, Sasha. It's a good one and I hadn't thought of it, but unfortunately no, it doesn't work in this instance. I'm glad that Scarecrow has found the two columns useful at least. If you "stretch out" the screen to magnify further, you may be able to get just one column up on the screen at a time.

There's still no word from Dr Phil. I suspect my experience this time may be the same as Trish's. Or maybe it's just that he's busy out trick or treating with Esther this evening...
 
As Dr Phil Hammond has been repeatedly tweeting Jeremy Hunt on Twitter, trying to get him to answer a question, I felt it was appropriate to ask Dr Hammond to answer the questions that @Spoonseeker has been asking since October. Dr Hammond is Tweeting Jeremy Hunt every day, and asking others to Tweet him too, but I am not minded to ask Dr Hammond again. He clearly doesn’t want to answer and I don’t want to be accused of harassment. It’s disppaointing because I was encouraged by his previous engagement with Spoonseeker and he would be a very useful person to have onside.







It’s unclear to me why he is calling on Simon Wessely for help.





Edit: I should add that Dr Hammond has unfollowed me following our exchange.
 
I would be interested to understand a bit deeper about the children "who did not respond well to treatment", which is a rather imprecise statement. Is he really saying what is implied, that they simply did not improve? Or is there another statement buried in there, that some of those kids actually deteriorated, and if so by how much?
 
Hammond is so annoying. He always evades the important specifics, and retreats to general calls for more 'bio-medical' research, or something like that. That sort of thing looks bad coming from Sonya Chowdhury, but it looks even worse coming from someone who is being paid to work in a specialist CFS service.
 
Unfortunately “becoming assertive” in the way that has been so successful for HIV campaigners is being interpreted by some health professionals as ‘harassment’.
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Very true, but this makes me think, perhaps instead of us "being assertive" we can recruit some doctors to do the same, it won't fly to say other doctors and researchers are sending death threats, it not only carries more weight but if they decide to make those public is will only humiliate them further. Imagine Ester posting a letter from a Nobel laureate that explains the flaws in her research and she claims its vexatious or threatening. :D
 
alex3619 said:
They (not EC) did that to James Coyne in relation to PACE which got him fired up.
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Indeed, though i'm reminded of David Tuller being thrown out of EC's presentation, if it were a Nobel laureate it could have made for an international newsworthy embarrassment.
They are determined to screw us over, we need to publicly humiliate them with their own lies. Think of it as a propaganda war, it should not be but it is.
 
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