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I might add that if ME relates to a log jam in tubulin servicing via TPPP then it might be good news. There is no evidence for any progressive damage to tubulin assemblies in ME in the way that there is clear evidence in Alzheimer's. I have a strong impression that PWME retain full mental...

I might add that together with some other groups I am of the view that tubulin assemblies may well be where all conscious experience of the world occurs. If you like tubulin assemblies are our virtual reality goggles - but for the real world. I don't think that would mean that a problem with...

I think its effects may only be found within cells. So yes, this would explain exactly why the mechanism of me is so hard to observe. Tubulin is a polymerising protein that probably does not occur much in fluid compartments and if it does any changes in the TPPP gene may not affect levels...

I would say it is intriguing but nothing more as yet - no hard association. But if DecodeME pulls out the same site it would be something major - even if the DecodeME statistical analysis in isolation is also inconclusive. If it is spurious DecodeME should draw a complete blank - that is not...

I am puzzled by this @Keith Geraghty. I was not aware that DwME had had negative comments on twitter. It would be useful to know about that. Presumably there has been no comment here because nobody was aware. I myself have significant concerns about the material produced by DwME and would like...

Yes. Sorry about the obscure sentence. I think we are talking about exactly the same idea. Tubulin biology is very complicated. TPPP is involved in extending tubular chains. Tubulin extension is important for myelin growth and also for nerve cells themselves - and memory and learning. It is...

Mm. But we are told the company has been constantly talking to all the relevant people. Not just looking up a neurological list.

Not dumb at all. An inability of brain cells to process stimuli with relevant tubulin restructuring would make a lot of sense. If some basic brain process designed to triage and catalogue sensory input were to have its control centre clobbered (probably brainstem) then fatigue, immune activation...

And why does is this system now posted on an ME/CFS site? That doesn't happen by chance. If it is being promoted to the wrong people what else might not quite work?

Well if that is what it is then the website should say so in a way people can understand. If they are interacting with NHS staff I doubt another electronic link would do more than waste even more time with people fiddling with electronics and finding they don't work.

No, multi system means pathology in many systems. It has done since I trained fifty years ago. And its use in the context of ME was designed to imply that - without any reliable basis. It was designed to plug research programmes that had found results that never got replicated. Quite a lot of...

Your post tells me as a doctor what I need to know - that this is a horrible illness nobody understands. Unfortunately, the people who dreamt up this 'complex, multi system' business knew exactly what buttons to press to make it sound to lay people that they knew what they were talking about...

I guess this tells Ian's story: https://www.openaccessgovernment.org/the-journey-to-building-a-patient-neuro-rehabilitation-platform/106369/ We live in a world that wants to take everyone for a ride. It comes in different forms. And life is tough to start with.

And the patients are being remarkably civil. To accuse them of aggression and making incorrect statements (that are in fact correct) seems to me pretty poor.

I would second Trish's comments @Ian NeuroProActive. It is completely opaque to me as a physician what your organisation is providing, other than a source of income for itself. It is indeed odd that you should approach an ME group now just after NICE has established that rehab programmes are...

Come off it @Ian NeuroProActive. The people here have their heads screwed on. The fact that you have had 'rapid adoption' means nothing. Maybe you are not aware that IAPT has had widespread adoption despite being based largely on unreliable evidence. The patients here are not 'difficult' (I am...

It very specifically means, in medical terms, that pathology occurs in multiple systems. Talk of systems is talk of mechanism and as you say, no mechanism is known. It very definitely is not meant to mean lots of different symptoms, it wants to claim more. The use of the term is designed to...

DwME clearly want to speak with authority. They need to if they are to be taken seriously. But simple things like the credits for this psychiatry piece make the process look amateur: Psychiatry and Psychology Working Group Dr Crowder BSc (hons) MB ChB FRANZCP, Associate, DwME Yochai Re’em...

It should justify the statements made. The NICE advice on diagnosis is just a rough and ready approximation to what is really needed - an understanding of why a label is being used. Rather than say that ME is a disease and PEM is the most important symptom I would say something more like...

And really this sort of account is not alright for lay people. ME is not a nultisystem disease in any meaningful sense of the word and calling it that is likely to generate misunderstandings in patients and carers that may do significant harm. I find myself very much in the middle here. I think...