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I’m very sorry to hear about your cancer, Jo. I didn’t know. Given the heterogeneity and the number of people who are diagnosed with ME and then rediagnosed with other legitimate diagnoses I have always thought it improbable that it is only one illness – if so many different known illnesses can...

What I meant by a continuum is that the illness is defined as a threshold of a variable which is also present in the healthy population. In the case of type two diabetes the variable is blood glucose. There is a continuum of blood glucose levels from healthy to diabetic. As I said, I don’t...

When somoneone in the UK says they were diagnosed with ME for a long time before they were eventually rediagnosed with Lyme disease, you can usually make a fairly accurate guess about where they were diagnosed. The people making these diagnoses and prescribing antibiotics are medical doctors...

Thanks for this post, Luther. I had thought about the idea but I hadn’t come accross the term before. Yes, this is an example of success or survivorship bias. One often hears successful sportspeople telling the world how their success in winning some prestigious competition just goes to show...

Yes, I’ve made this point before, and it’s worth repeating: if there are 250,000 ME/CFS patients in the UK and 15-30 million worldwide, if each patient raised on average $10 per annum for research that would raise $2.5 million in the UK and $150-300 million worldwide every year.

I would also add that one of the things that I’ve had learn to endure as a patient is how to deal with the volume of advice I receive from very well-meaning, friends, relatives and acquaintances who try convince me to try all manner of quack treatments. It is not only the sick and desperate who...

Would you say that syndrome is more accurate term based on our current level of knowledge? For the purposes of this MEpedia page, would you say syndrome/condition/illness/disorder/something else? Your comment implies a degree of unpopularity that I am not aware of – or is it just that you...

Is “organic” a more useful term than “biological”? Whenever I hear the term biological in discussions about ME I think of Prof Crawley’s interview on the Today programme explaining how she changes people’s biology with psychological/behavioural interventions. Is there a Godwin-esque Law which...

Unfortunately, you seem to have made a number of inferences which do not reflect my views. If that was my fault for expressing myself badly, I apologise. I hope that posting on this forum helps us all to understand each other’s experiences. As it happens, my book was published in 2003. Since...

ME Research UK’s page on “What is ME?” is worth reading: http://www.meresearch.org.uk/what-is-me/

I’m not qualified to comment on the accuracy but it seems to be well written and reasonably easy for the lay reader to understand. Typo/grammaratical suggestions: Sorry, I’m not yet registered on MEpedia or I would have made these suggests there. To me “enterovirus” looks strange without...

I realise that I am several years late in asking these questions but: 1. What is the advantage of having a separate MEpedia site rather that adding the same information to Wikipedia where it would potentially get more editors and readers? (I don’t mean this as a criticism, I’m just interested...

My thoughts exactly. That was partly why I invited him to join the forum. I can understand how somebody who is quite mildly affected might be inclined to frame things in such a way but it does not resonate with my experience. Yes, I believe that any illness can give you cause to reflect on the...

Merged thread https://www.bbc.co.uk/news/health-44969741 Good article. If this is reported in the press, it presents a good opportunity to get letters published about associated ME issues – CBT/GET, PACE, lack of funding for biomedical research etc. As a veteran newspaper letter writer my...

It’s as clear as Trump’s Helsinki press conference to me. Wessely is a signatory to the white letter above, along with Lady Wessely and The RCP. Would that they were on opposing sides.

Astonishing that SW is a signatory to a letter which states: Perhaps patient experiences only count if they are suffering from an illness that isn’t ME, in which case “properly taken account of” should be interpreted as “completely ignored”. I wonder if this letter should be quoted to those...

The following message has now been posted below the blog by snow-leavis aka Peter Gordon who write the blog: Meanwhile I thought I would bring the blog to Mike Godwin’s attention:

Don’t most illnesses limit energy to some extent? For me, it’s always been more about inability to recover. It would be much easier if it was just about limited energy and one could push oneself to one’s limit every day. At least part of the problem seems to be the abnormal response to pushing...

Thanks John. Can you add a link to Monaghan’s question. Out of interest, was this a FOI request or did you just write to the DHSC?

True in science but I’ve always thought that many literary writers strive for ambiguity. I used to loathe it but I’ve come to embrace it more over the years – if used appropriately. I don’t have much experience of science writing but my letter in Nature this year went to and fro the editors...