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.