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.
1) You mentioned to Jennifer that some of your young patients improve when they have graded exercise therapy at your clinic. When you responded to me last year, however, you said that ‘the mainstay of treatment ( at the clinic) is activity management’. Which of these do you actually use at the clinic? Or is it both?
2) You were also telling Jennifer that when you do graded exercise therapy, you cut back on the amount your patients are doing. I wonder if your approach is the same as that described in the Magenta protocol, where patients start on a baseline level which is the same as the median amount which is currently being achieved each week. The total level therefore remains the same but there is more consistency in the amount of exercise day to day. Once this baseline level has been achieved every day for 1 to 2 weeks, then according to Magenta, participants are advised to increase exercise by 10 to 20% a week. This means that any cutback in exercise is not substantial (really more a smoothing out than an actual reduction) and does not seem to last very long. Is this indeed what you do in the clinic? In which case, the overall emphasis seems really to be more about increasing the level of exercise rather than cutting back. Or do you do things another way? If so, why do you not use the same regime as Magenta?
3) Jennifer remarked that the regime in your clinic as you described it to her seemed very like pacing, but the Magenta advice to increase by 10 to 20% a week seems much less flexible than that. Even if the increase is not rigidly imposed, the therapist – and inevitably the patient – will feel under pressure to deliver it. The most crucial issue is: what happens if symptoms start getting worse? Are patients encouraged to cut back on exercise or to carry on regardless? The Magenta protocol doesn’t seem to say what the advice will be but the PACE protocol is clearly in favour of carrying on as far as possible in spite of worsening symptoms. Is this the advice given in your clinic I wonder? If so, then it certainly isn’t like pacing. And if otherwise, what is the advice given?
I’m sorry if these questions seem fussy and pedantic but it seems to me that a lot of the problem in understanding CFS is that so many factors are not precisely defined. From a short conversation, it can seem like a graded exercise program is very similar to pacing but the devil is in the detail. Similarly, so many researchers have made the mistake of assuming that patients diagnosed with different diagnostic criteria all have the same condition.
As you said in the interview: “we’ve noticed there are some kids who do improve when they have graded exercise therapy and cognitive behavioural therapy – and some who don’t, which suggests… either we’re dealing with different conditions or chronic fatigue syndrome is a variety of different things.” As Jennifer put it (with your agreement): “we have to make sure we are treating the right patients with the right treatments.” This is true not least because the wrong treatment can lead to long term disability.
So I couldn’t agree more that we need to distinguish between the different types of patients, but we’re not going to do this as long as we keep on using a dogs breakfast of different criteria to identify patients, frequently conflating ME/CFS with generic chronic fatigue and even making up new variations as we go along. I’m afraid that a prime example of the latter appeared in the original protocol for FITNET-NHS, which – for no very good reason – proposed using a version of the NICE criteria which did not require the presence of post-exertional malaise. I understand that this has now been scrapped but why on earth was it thought to be a good idea in the first place? Unless we start describing patients precisely and consistently, we will never get anywhere.
You mentioned that some of your patients do not respond well to graded exercise and it would be interesting to see if such patients fit the Canadian criteria rather than Fukuda or NICE. You also showed great interest when Jennifer described the use of the VO2 Max test to try to make sense of patient response to exercise. You even suggested collaboration. Would it not be possible to make that happen? It is indeed important to distinguish between the different types of patients so why are you not using some of these (what seem to me to be) obvious strategies to help you do so?
I think it is great that you are helping so many children who respond well to your therapies but you acknowledge that many do not and I can only agree that there is a very great need to distinguish between them, not least for the sake of those who you describe as having severe symptoms for a long time. As you say ‘that is where most of the attention needs to go’. Once again, I can only agree. I applaud what is obviously your heartfelt desire to help such children. As a concerned and assertive patient, I urge you to do whatever you can to bring that about.
9 thoughts on “A (Second) Letter to Dr Phil Hammond”
Could you break up your post for readability, please? Many patients have difficulty reading and a ‘wall of text’ is especially difficult to read. (Please feel free not to publish this comment!)
Hi Sasha – Apologies! -I would love to break it up but the software won’t let me. I was forced to write this post on my tablet due to desktop malfunction and it keeps disappearing the line spaces. I don’t like it like this either. I have my desktop repaired now so I’ll see if I can fix it. Apologies once again…
I wonder if he uses physiological measures to guide his parients on how much rest they need and to ensure that they do not increase their acticity levels to rapidly? If not why not?
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Thanks for asking all the right and important questions: for too long our treatment has been based on utter sloppiness!
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Excellent letter. I very much hope that Dr Hammond will respond.
I would also like to ask Dr Hammond another question: as an ME/CFS specialist, high profile media personality and campaigner, what are you doing, and what more could you do, to help raise awareness about ME/CFS, and desperate need for massive investment in biomedical research after decades of under-investment which has led to the neglect and mistreatment of patients?
Like spoonseeker, I am unclear exactly where you stand on the key issues pertaining to ME/CFS. I am unsure whether this is because you are restricted in what you are able to say because of your job, or because you are concerned that if you expressed your views more candidly it would make you unpopular with patients. As you are aware, there is a very clear divide in the UK between those doctors who subscribe to the “biopsychosocial” view of ME/CFS and those who reject it as the nonsense. It would be helpful if you could clarify exactly which camp you are in.
My final point is with regard to your use of the term “chronic fatigue” in the quote at the beginning of spoonseeker’s letter. As I’m sure others will have pointed out, ME/CFS is not “chronic fatigue”. The former is a serious and devasting disease which destroys people’s lives. The latter is a common symptom experienced by many people for a variety of reasons. The suspicion among many is that many of the ME/CFS clinics – particularly those associated with Esther Crawley – recklessly conflate any sort of fatigue or tiredness with ME/CFS. Referring to ME/CFS as chronic fatigue is deeply unhelpful and damaging to patients.
Thanks for taking the time to listen. And thank you to spoonseeker for asking these important questions.
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Thank you 😇 👏 .. Perfect letter 👀. Can’t wait to see the reply.
With ample evidence of PEM being the result of harm from over exertion, potentially long term, harm, the idea of using repeated PEM as a guide to push the energy envelope in the hope of recovery (as with any form of GET), is outside any intelligence.
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What a good letter.
However, given his compromised position, I don’t think that he’ll respond in any kind of meaningful way.
I say that because ultimately he has a vested interest in maintaining the current status quo and he certainly dares-not to contradict his boss – Esther Crawley.
Whilst he comes across as a nice guy who wants to help, his concerns don’t seem extend to him actually doing anything meaningful – or at least nothing that would involve putting his own neck on the line. Words are and platitudes are cheap – actions speak much louder. In my opinion, that makes him (to some extent) a hypocrite.
I would point to the fact that in spite of everything that he has been told (by well-informed patients / advocates) and all of the biological research information that has been shared with him over the past year or so, he doesn’t appear to have learned much as a result – certainly it seems to have had little impact upon his clinical practice. Why isn’t that knowledge having any impact upon his behaviours? Imo, that raises questions about his personal integrity and professionalism.
Therefore, until he changes his “run with the hare & hunt with the hounds” position, I don’t believe that he can possibly answer the kind of searching questions that this letter poses in an open and honest way.
I hope that he proves me wrong.
Advance warning alert……time for Phil Hammond to make a difference?
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