Swings amongst the Roundabouts

Anyone reading through the numerous posts on this site could get the impression that nothing encouraging ever happens in the world of ME. Well it often seems that way, but good things do occasionally come along and I have to admit, if I’m honest, that these posts are more likely to be bearers of bad news than good because I’m more likely to pick up my tablet and write about something which has annoyed me.

Having moaned so much about journalists last time, however, it seems only fair to redress the balance by reporting when one of them has done a good job. So congratulations to Tom Whipple of The Times for a well informed article on the review of the NICE Guidelines. Thanks also to the ME Association for providing a way round the paywall – and to Dr Keith Geraghty who appears to have been instrumental in setting this article up. I really hope we can look forward to further reliable dispatches from Tom in the future. There’s a lot of opportunity in the ME field for any journalists who are willing to consider taking the trouble to get to the truth.

And speaking of NICE, the decision to review the guidelines after all came as another piece of good news. Bearing in mind the information available, the revised advice in the USA, the petition with 15,000 signatures, and the Early Day Motion in parliament, you might have been forgiven for anticipating a change of mind at NICE, but we’ve got so used to having our sensible arguments ignored, that it came as quite a shock when it actually happened.

And now yesterday, another good media item on M.E., this time a special phone in on BBC Radio 4’s ‘You and Yours’. Congratulations to Dr Charles Shepherd and to all the callers who did an excellent job. Prof Crawley was less impressive but more of that in a moment. I know that a great many patients contacted the programme so well done to you lot too. Here, for what it’s worth is my own contribution, dashed off yesterday afternoon. Yes, I’m moaning again…

Dear You and Yours – Thank you for your programme on ME/CFS which was much better informed than most items concerning the condition which appear in the media. I’m sure that many patients will have welcomed it. However, there are a few things I would like to bring to your attention:

1) There are two types of CBT used for ME/CFS. The first is simply to help patients come to terms with having the condition, dealing with feelings etc. This is the same as would be used for any other physical condition, such as MS or cancer. This can be very helpful and most ME patients do not have a problem with this. However, the type of CBT most frequently used for the condition is very different. It is used to try to convince patients that there is nothing physically wrong with them, that they are simply being kept ill due to deconditioning and all they have to do is to exercise more to get better. This flies in the face of the physical evidence and when used in conjunction with graded exercise therapy can make patients a lot worse. Many patients have become permanently severely disabled due to this approach. (This is the type of CBT that was used in the infamous PACE Trial and is still used in many NHS clinics. So when its proponents say that there isn’t a problem because CBT is used for other physical conditions they are, I’m afraid, intending to deliberately mislead.)

2) No mention was made on the programme of the severely affected, who comprise about 25% of patients with ME/CFS. The vast majority of these are permanently housebound or bedbound. Many are unable to even sit up in bed, tolerate light, or converse with their loved ones. Most of these receive no medical attention whatsoever as GPs often refuse to visit them. Most doctors do not believe that people ME/CFS can become so severely ill, and wouldn’t know what to do about it even if they did.

3) The first forty minutes of the programme were excellent so it was disappointing that you gave five minutes at the end to Prof Crawley with no one to challenge her. She is one of a small group of UK doctors who have built a career on poor quality, misleading research which has only led to confusion in the field. Her latest paper on the lightning process is an example of this but there have been many others. Studies such as these (and the PACE trial itself) are misleading for numerous reasons but one of the problems is that many of the patients selected do not have ME/CFS at all but fatigue due to other conditions such as depression. Many of these will respond well to graded exercise or possibly the lightning process, ‘treatments’ which are harmful to people who really have ME/CFS. This would not be a problem if efforts were made to clearly distinguish between the different types of patient but Prof Crawley persistently fails to do this, conflating patients with ME, CFS and generic fatigue. These days she is frequently in the media, much to the dismay of many patients. We have noticed that there is never anyone to challenge her point of view. Why not? It would have been interesting to listen to Dr Shepherd in conversation with her, for instance. I hope that if you cover the subject again, Prof Crawley will not be allowed to go unchallenged.

Notwithstanding the above, your programme was like a beacon of light amid a sea of misinformation about our condition. Thank you for producing it.

Hmm, ‘beacon of light’ may have been a bit over-enthusiastic but it’s best to give encouragement where it’s due. Lets hope to see further outbreaks of truth in the UK media soon…

P.S. Yes, I know I’ve conflated ME and CFS myself. Sorry. But it seemed best to write using the same terminology they used on the programme. Advance notices for ‘You and Yours’ spoke of ‘chronic fatigue’ but it seems that someone put them right on that one. By the time of the actual programme they were saying ‘ME/CFS’. At least that’s some progress.

One thought on “Swings amongst the Roundabouts”

Gail Reid says:

September 27, 2017 at 2:43 pm

Fab😁 great article. Great letter.to the programme after.thanks xx

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