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With regard to the same tweet - If the GP has recommended LP and a patient struggles with it, is told by their LP practitioner that they are responsible for their own lack of progress or deteriorating, how likely is it the patient will feedback the problems with the GP? Aren't they more likely...

:thumbup: I think @Jonathan Edwards a while back said something along the lines of if you wanted to know if the patient felt better you could just ask the patient. Even where there are objective measurements the definition recovery & harms for any trial should be agreed with the patient...

I fear we have now reached a new era - the era of post-medicine.

Another thing that strikes me about attempts to measure fatigue is that not only is it impossible to measure, we can simply rate as @rvallee says, it also assumes fatigue is one dimensional. It is not. If we are to use the word "fatigue" to encompass such a wide range of feelings then we...

So what? @dave30th has received donated funds from many patients and ME advocates. His only remit ( as far as I'm aware) is to look into matters and report his findings. Whatever they may be. The outcome of the trial will make no financial difference to David Tuller. If we found a cure for...

If there isn't a tsunami of depression then you can bet your life they'll redefine what depression means! This pandemic is a godsend for the MUS, IAPT brigade. No matter what inroads made so far in showing it up for the nonsense it is, they'll be using the pandemic as an excuse for years to come.

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My husband and his colleagues don't seem to fit into any of the groups Sir Simon has "guessed" at. They are complying with the rules to stay healthy, their employer discussed returning to work & some have agreed to go in with lots of restrictions on what they can and can't do. Most will remain...

Since I have become ill I have been asked to fill in a number of health questionnaires - I'm not referring to ESA or the like here. In every case there were questions that were ambiguous and open to interpretation on the part of both the person filling it in and the person assessing you in a...

Given the high disease burden on some ethnic minority groups, are you sure you wouldn't like to rephrase this question? The type of jobs people do, their housing, the quality of food they have access to, plus how genetic components affect immune systems and response to infection are more...

My brain is struggling at the minute so please forgive if this is repetition- Do we know if harms are identified as part of the design? When a patient tells their LP practitioner that their condition has become worse, the protocol is to encourage the patient to work harder at practicing the...

Just not Sir Simon. He wrote a book on it. Maybe @Jonathan Edwards might have a comment to add on trial design?

Or many of them will struggle on and hide it as best they can from colleagues. I've heard of consultants who had to quietly go and rest in their cars during the day just to get through. They didn't dare let colleagues find out as it would have destroyed their reputation. I've heard about...

A couple of thoughts @Marky 1). If the "control" also go on to have LP later this makes long term follow up meaningless. Given ME is a fluctuating condition and patients can have relapses that last months, plus some are lucky enough to go through less severe patches (though still ill), to...

I loved exercise. I adored Pilates.and even own a Pilates machine. I even worked out a cut down very minimal routine with the lightest resistance. When well enough, I never had to steel or push myself to get on the machine. I really enjoyed it and often felt like I could keep going and do a...

Yes, we can see how important routine is to Trudge Chalder. She and her pals have been following the same routine at work for years and years with only the most minute changes. Regardless of the patient cohort they've been rerunning the same experiment on different groups of patients and...

Haven't covid patients already suffered enough? :(

Thanks for the references @Kalliope :thumbup:. I still think it is too soon to know. Those references are not enough, to my mind, to extrapolate to the wider population with any authority.

Sure, but where are they getting this information from? I'm not saying it's incorrect. I don't know but, given covid has such a wide array of symptoms, we don't know for sure who has had covid and who has not. In the UK at least there are a probably a fair few who have possibly had it...

And this source for this claim is? Give 'em a chance to actually recover from covid first! For some reason I have an image of vultures circling.....