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YES! I completely agree with this and have been saying it for a long time. Careers, egos and reputations must not be prioritised over patients’ best interests, whether we are talking about researchers, doctors, establishment figures or people working for charities. As a community we have such...

I thought I would use this opportunity to give Dr Phil Hammond another prod: By endorsing a charity which has signed the open letter to The Lancet he is half-way there. To have someone with such a high profile on side would be extremely helpful but I am not optimistic. He may have been...

I agree that: - The statement is a welcome step in the right direction - It is a mistake to endorse BACME I would add that it is possibly unwise to endorse any part of the NICE Guideline at this stage (even a part which is acceptable). In the past I have asked @Action for M.E. to acknowledge...

Another potential signatory to @dave30th Open Letter to The Lancet:

No I didn’t! Must have been someone else but thanks for alerting me. Just to add that I fully support @JohnTheJack’s letter, although, for the reasons @Dolphin suggested, I decided to submit my own.

Need to be careful here. The FTT found the allegation of threats from activists to be unsubstantiated. However, I think it may be accurate to suggest that PACE researchers have been subject to “hostility” (ie opposition). From the OED: Letters to the Editor of the Times should be sent to...

I used to assume that was the case. I used to assume that there must be some people being diagnosed with ME/CFS who had something very different to me which responded well to CBT/GET. How else could all these apparently intelligent people be so convinced of the effectiveness of their treatments...

Many thanks for posting this, Amy. I am sorry to hear about your negative experiences. I have not followed everything that you and your family have done but everything I have seen has been hugely positive, and I am enormously grateful for all your efforts and everything you have achieved. Your...

In my response, I was in two minds about whether to refer to specifically biomedical research or not. On the one hand I wanted to emphasise that the methodological problems with PACE are nothing to do with how ME is classified, but I also wanted to express my view that it is regrettable that...

Don’t tell anyone, but that’s me. Thanks.

Do you think the pluralisation of syndrome was a typo or deliberate? Is he suggesting there are different chronic fatigue syndromes? I’m not blocked on Twitter so I could ask him. I have also just submitted a rapid response to the BMJ, making similar points to the above posts.

I think this is a good idea. If you wrote a short blog asking people to write to their MPs and telling them how to contact you, I’m sure the charities (particularly #MEAction and MEA) would help to publicise it. If we manage to get a debate in the main chamber of the House of Commons this autumn...

@dave30th I wonder if this presents an opportunity for you to get the letter (or an abbreviated version) published in the Times as a Letter to the Editor?

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...