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Am I being foolish, but surely by looking just at referrals for Lyme’s assessment it is inevitable that you will find more false positives than missed diagnoses, as people where a Lyme’s diagnosis has never been considered as a possibility are much less likely to be referred for Lyme’s...

Prof Garner tweets “Nice Guideline for CFS/ME derived from activism, not research-from a recovered patient. I have never seen such a corruption of the evidence-informed guideline process.” Though what follows is my attempt at teaching my grandmother to suck eggs, I think it is worth repeating...

Wouldn’t the middle ground be a flattened ovoid, rather like a squashed deflated rugby ball?

Given the use of the term CFS and the prominence of the idea of fatigue, one wonders if this will result in a preselection of very specific subjects, which along with the small sample size makes how they define ME/CFS and which diagnostic criteria they use very critical in ensuring a...

Philip Cowen PROFESSOR OF PSYCHOPHARMACOLOGY Dept of Psychiatry, University of Oxford See https://www.psych.ox.ac.uk/team/phil-cowen He is a psychiatrist with historic links to Kings College, London. His research interest seems to primarily relate to psycho pharmacology of depression...

I don’t know if this is the same study, but Neurochemistry of CFS and post-COVID-19 fatigue Named contact Phil Cowan See https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/neurochemistry-of-cfs/

Migraine, brain tumour, raised intracranial pressure and carbon monoxide poisoning have some symptom overlap, ie headache, does this mean that they have a ‘shared pathophysiology’ and any differences between them can therefore be treated as psychogenic?

Though I am not a fan of the word ‘fatiguability’, it or an alternative should be used in conjunction with PEM. Only if it is made very clear that PEM is different to just tiring, even tiring quicker than an well person, will people understand what is meant by PEM. Also hopefully this will...

sad that this petition has not got going yet.

Is historically the problem not the lack of a specific ME medical specialism, as much that we do not fit easily within the existing structure of medical specialisms and no one existing specialism has taken ownership of us?

Creating a medical specialism is I think something of a boot strap operation. You create specialists posts of various sorts, which then train others and conduct research, which hopefully prompts other services to follow suit. In the UK, in theory the creation of the specialist ME/CFS services...

Aren’t ministers meant to issue a statement any correcting errors of fact they make in Parliament? There has been a fair amount of fuss recently when ministers and the Prime Minister have just ignored requests for them to do this. Unfortunately there does not seem to mechanism to oblige...

What does this tell us? I imagine if you did an analogous study looking at training people in spiritual healing or mediumship you would get very similar results. Doesn’t this miss out one important component? If you are looking at communication between professionals and patients, don’t you...

A problem is that sometimes people may have more than one condition. A friend, with an under active thyroid condition, experienced years of distress and confusion and problematic thyroid drug management of her condition, before she suspected she had concurrent ME and then persuaded her...

This is what the Times article says of the mother’s ’Parkinson’s’ and her death: The article does not give enough information for us to be able to conclude if the mother did or did not have ME, and given the potential variability of the condition even within an individual, I don’t see how we...

How disappointing. I did not win the Lottery, despite the peer pressure to do so via on line support groups.

I don’t know if there have ever been any unambiguous cases of either Münchhausens or Münchhausens by proxy, despite its popularity in drama and popular fiction. Personally I would have thought that if you were planning to fake an illness for attention and a need for medical validation you would...

Yes, I have always since diagnosis declared ME on insurance forms, as not to do so could invalidate the policy. But I have never had any requests back for further information or any restrictions on cover added. In relation to driving beyond notifying insurers, I have not notified the DVLA, but...

[Note, I wrote this response a couple of hours ago, but managed not to post it though I thought I had. One benefit of the software used for S4ME is that it hangs onto drafts we leave hanging rather than such as Facebook that will delete a draft if you just look away or accidentally sneeze. I...

I agree this is an important issue, and would be happy to work with anyone to achieve this, though individually going beyond comments to collating larger amounts of information, adding sources and references, etc, I quickly hit my personal cognitive limits so would struggle to achieve/lead...