First, a brief word of apology: I hadn’t realised what a difficult process it would be to embed a load of tweets into this blog. WordPress protested in various ways at this indignity but I thought I had overcome them. The post looks fine on our desktop PC and my smartphone. So far so good. I hope it’s the same for you. But then I discovered that if I follow a link from a tweet onto a tablet, a whole load of duplicate tweets which I had battled hard to suppress suddenly appear out of nowhere. If this happens to you, please press or click or whatever it is these days on the title of the blog. ie Spoonseekerdotcom That should make it ok. If you then want to leave a comment – or look at the comments – press or click on the title of this particular post, ‘Feedback to Dr H’. You should then have access to the comments without the duplicate tweets returning (I hope!) If you get any other problems with the post, please let me know and I’ll try to help if I’m up to it. Grr. I’m not going to try a post like this again in a hurry – and please don’t ask about the PEM.
Tweeting this quote, which happened to catch my attention on Facebook, recently provoked a flurry of activity on my Twitter feed when the medical writer and broadcaster Dr Renee Hoenderkamp took exception to it as follows:
It was not my intention – or, I think, that of the person who made the remark on Facebook – to criticise all GPs, and it does not seem to me now, in the cold light of day, that anyone carefully reading my tweet should get that impression. I argued as follows:
I don’t think the tweet disparages GPs in the way you suggest. Point being made is they are not expected – or indeed trained – to know anything *about #mecfs * nor do the vast majority feel the need to find out. I’m sure they’re too busy elsewhere but it’s tough on ME patients https://t.co/uhnSg3fE99
— Spoonseeker (@spoonseeker) 26 January 2018
Dr Hoenderkamp retorted:
And so on:
Patient Advocate Dr Claudia Gillberg also contested Dr Hoenderkamp’s interpretation of the original tweet:
If you are reading this, Dr Hoenderkamp (and I shall be inviting you to take a look) I hope you will agree that a pattern is emerging here: that by and large, to judge by these tweets, people with ME/CFS do not consider their GPs (or other GPs they have consulted) to be well informed about the condition. The tweets that came flowing in that afternoon told between them a very consistent story. There are many more of them below. These were just the tweets which came in from the ME patients who happened to be on Twitter that afternoon. Had I put out further tweets to ask for more, I think we could soon have got into triple figures and beyond. Even the tiny minority of patients who eventually managed to find an informed doctor recount how many others they tried before they ‘struck lucky’.
Of course, this only amounts to anecdotal evidence, but the results seem to me to be too consistent to ignore. What is more, I believe a poll among GPs would give a similar result. Here, tweeted by Joan McParland, are some comments from a questionnaire circulated among medical students after viewing the recent film ‘Unrest’ about ME. It is clear that they were surprised by how little they found they knew about the condition and baffled why this should be the case when so many people are so fundamentally affected.
It is good that Dr Hoenderkamp, unlike these students, feels she has been trained in ME but many patients tweeted to register their concern about what she might have been taught. Here are some of their comments on this issue:
A good way to find out more about the reasons why the PACE Trial (which claimed to provide evidence for the use of CBT and GET for ME/CFS) is now widely judged to have been discredited is to read Trial by Error, a detailed expose of the trial by pubic health lecturer and journalist Dr David Tuller. The first installment (of many) can be found here, though simply reading the summary will go a great way towards explaining why it has led to over a hundred eminent scientists and researchers writing an open letter to The Lancet calling for an independant review of the study and why CBT and GET are no longer the recommended treatments for ME/CFS in the USA.
The Journal of Heath Psychology special issue on the PACE Trial is also well worth a read and is available as a free download.
Moving on from PACE, the film Unrest, which has already been mentioned, is a powerful window into the world of severe ME, a chance to connect with some of those 25% of patients most severely affected, most of whom are long term bedbound, spending their lives confined to a single room and usually with little or no medical help. I have been drawing attention to the fact that doctors don’t understand ME but their understanding of severe ME is unfortunately so much worse. This must be the only condition where the sicker you get, the less attention you get from doctors. Most of them have absolutely no idea how severe the illness can become and no idea what to do about it if they see it. Again, I am not getting at doctors here. The problem is most of them aren’t taught about it so what can they do?
Unrest mainly skirts clear of PACE and other such controversy but it does not shirk away from sharing the raw experience of the illness. It has won numerous awards and can be viewed on Netflix.
Also recommended above are the purple booklet from the ME Association, which is a guide to the latest ME/CFS research written for doctors, and researcher Prof Jose Montoya’s question and answer session on ME, which appears in Paul Watton’s tweet above. There are many more such sources of information which could be mentioned but these few which I and others have suggested are a useful introduction to understanding the true nature of the condition, an essential antidote to the misinformation about ME/CFS which is all too abundant.
There is lots of opportunity for informed doctors to spread the word about the reality of ME/CFS. In his tweet above, Paul suggested you should do a video blog about it. A great time to do this would be in May/June when most of the eminent biophysical ME researchers come to Britain for the annual Invest in ME conference. I am sure they will be eager to talk about their latest research and ME in general.
Before returning to the many tweets of 27th January, here’s a particularly powerful – and upsetting – one from ‘motherofaliens’ which came in only the other day. Dr Keith Geraghty’s tweet, which led to it, is also very relevant of course:
Sadly – and shamefully – children are amongst those with ME who suffer most from the attitude of doctors. At least one prominent paediatrician does not recognise the existence of severe ME in children. Instead, the parents are blamed for the child’s condition and all too often are threatened with court proceedings. Only the efforts of Jane Colby of Tymes Trust and the paediatrician Dr Nigel Speight prevent such children being taken into care. Tymes Trust have dealt with over 150 such cases already and the problem seems to be escalating.
If you have read this far, Dr Hoenderkamp, thank you for doing so, and perhaps you are starting to understand the reasons for our concern. I shall end with some more tweets received in response to yours of 27th January. I hope I have included enough to give you an idea of the numbers who have had a similar experience. There were more tweets I could have included but embedding them in my blog is proving to be an arduous business, and I too have ME..
And finally, here is Dr Carolyn Wilshire, responding to Dr Hoenderkamp’s original tweet:
spoonseekerdotcom 