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The only way to clarify these issues would be to experimentally introduce the oils in an effort to induce seizures whilst comparing this to a control group scrupulously avoiding the oils. However would this be ethical?

Is this a case of SAPS - silly acronym proliferation syndrome?

Coincidently the British MEA very recently published an item about a young woman who had had ME as a child but has recovered. Her parents are still fundraising for ME, including donating a percentage of profit from their aromatherapy business. Whilst it is good to hear positive stories and...

I think we still need a good basic ‘natural history’ or description of ME: That is what symptoms are present, but also are there any groupings or hierarchies of symptoms. This hopefully will lead to better descriptions of PEM, increased fatiguability, orthostatic intolerance, etc. What co...

It is possible that the right level of pacing sets up the right conditions for some people with ME to experience spontaneous improvement. We know that activity programmes of themselves do not cause improvement, but there is the possibility of the right activity management facilitating some...

Alternatively ‘Lower expectations and greater anxiety regarding exercise may reflect’ a realistic interpretation of what they are able to do without triggering PEM or a reasonable fear of exertion worsening their health. The conclusion appears to be yet more failing to justify the leap from...

Thank, I am struggling to read it at present, but it is useful to have access to it here in this context.

It looks like David Mark’s post is substantially the press release on Dr Myhill’s website which also contains her archive of materials relating to the whole progress of her complaint to the GMC (see https://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors ) I have not yet...

[Added - I don’t know how the following relates to putting the PACE data on the CSDR web portal ... ... ] My understanding is that Queen Mary’s is now refusing to release any further PACE data to FOI requests on the grounds that Prof Peter White’s early retirement means that the cost of...

I had reservations about some of Dr Myhill’s grounds for the original complaint to the GMC, but do think that it is worrying that the GMC should be able to reject out of hand undertaking any investigation of the complaint and then refuse to say what their decision to do this was based on for...

And if these theorists have their way, such patients will be denied any biomedical assessment and no relevant biomedical research will be allowed, ensuring the statement becomes “will never be found”.

My understanding is that when the GMC (General Medical Council) decided not to investigate [her complaint against] the PACE authors Dr Myhill asked them what evidence this decision was based on. When the GMC refused she put in a freedom of information request which they then refused on the...

What would happen if we imposed a five year moratorium on the use of questionnaires in psycho medical research? I dream of a utopia of objective outcomes.

Given the proponents of central sensitisation fail to define exactly what is meant by this at a neurological level, for example is it that neurons’ firing threshold is lowered or their conductivity is somehow speeded up, are they doing anything more than asserting a personality type. Without...

As @Mithriel says ‘this just lists all the things that people believe are caused by central sensitisation’, but this does enable wonderfully circular research in that you can then administer the inventory to people who experience these things and ‘prove’ they have central sensitisation. These...

(Note - I have not read the article itself, so may be being unfair, however ... ... ...) I don’t understand how you can postulate a neurobiological phenomenon, but then only seek to study it using questionnaires. Where are the scans or blood tests that actually demonstrate the existence of the...

When I was still working a significant proportion of my case load were people with neurodegenerative conditions and round about the time of diagnosis it was often a fight with family and with some medical staff to ensure the patient was adequately informed of the diagnosis. Often one reason...

Thank you @Barry for putting this so clearly. I had been struggling to put the idea into words. What happens psychologically may have implications for physical health but that is not the same as saying it is directly causal of physical health issues. If someone who has a broken leg is also...

I would say memory because I have no problem attending to what I am doing. I have additional attention problems in PEM, that relate to distractions, following a thread in reading or in a TV programme or coping with background noise, but not in a quiet room with only me the phone and the phone book.

I definitely experience specific memory issues during PEM in addition to attention problems. A good example is short term memory deficits as measured by digit span. The normal digit span is 7 +/- 2. My premorbid digit span was usually 8 and my current base line is 6 or 7. However in PEM if I...