The radiointerview would be a good start. There you will find many clues to his research.It might be worthwhile for someone to go look over the relevant threads to see if there was a bit more detail about what he's working on
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The radiointerview would be a good start. There you will find many clues to his research.It might be worthwhile for someone to go look over the relevant threads to see if there was a bit more detail about what he's working on
@voner thank you so much for satisfying my curiosity.
Any of the Lyme experts out there know much about anti-neural antibodies? Is this something researchers are trying to use to show like some kind of post-Lyme autoimmune response?
Prof. Edwards, given that even the NHS cite Lyme as one of the illnesses that have to be excluded before a diagnosis of ME can be made, and given that a number of ME physicians (KDM, Lerner, etc) have found significant numbers of Lyme cases in their patients, and that Lyme tests are notoriously insensitive, how confident can you be that the Lyme and the ME populations have been completely seperated out?
The study cited above will have the same drawbacks that I pointed out the Lyme vs ME spinal fluid study must have. This was in the thread about the Lipkin spinal fluid study. Basically, if the authors did a good job of seperating out the two populations, then what their hypothesis is a tautology. If they haven´t, then the significance of their findings can be called into question.
I'm sensing some confusion or reluctance to embrace all the diagnostic maneuvering that is involved.
Perhaps a better question is what role do TBDs, in particular Borrelia, play in the development of new ME/CFS cases?
Moreover, Borrelia is relevant because such a significant portion of the ME/CFS community has been exposed to it; we know this because there are so many of us that can prove prior Borrelia infection with simple labs.This opens wide the possibility of Borrelia and other TBDs as candidates for causing ME/CFS.
I truly am at a loss how any ME/CFS expert could be unaware of the daily trafficking in these two diseases, or of the potential role one has in the characterization and spread of the other.
Publication of papers serves a real purpose. I agree wholeheartedly. It's perhaps unwise though, to deny a reality, or ignore it, for want of a written word.
It IS interesting that nothing major has been published about this, though. I know some from the IDSA camp have published half-hearted comparisons, and there is talk about treatment protocol for PTLDS being crafted parallel to those the CDC promotes for ME/CFS (and we know what that means).
Is there a reason the IDSA wouldn't want such a tie? Would such a tie make it incumbent on the IDSA and Lyme researchers in general to pursue Borrelia as it morphs into ME/CFS - if it indeed does?
Sorry, just musing out loud.
The Facebook and online Lyme forums/communities are groaning under the weight of people told they have CFS or M.E, without any further investigation (Lyme, co infections or otherwise) who then go on to discover for themselves that they have Lyme, begin treatment for it and recover or improve significantly. I am in touch with very many people who this is the case for.
The CFS diagnosis is being bandied around and everyone gets tarred with its brush. All these patients cant be wrong. They are not post treatment lyme disease patients but people who have spent 5, 10, 15 or 20 years house, wheelchair and bedbound with an incorrect diagnosis, who have never even been offerd any sort of Lyme test.
I am embracing all of the diagnostic manoeuvres, Duncan. But we do seem to have a Catch 22. If the tests for Lyme are rubbish then nobody knows if these people have Lyme anyway. If they are not rubbish then they ought to have shown up in cohorts of ME/CFS patients. We cannot have it both ways.
Simple labs may show many PWME have been exposed to borrelia, but that tells us nothing if normal people show the same results - which is what is published so far.
I do not claim to be a ME/CFS expert. I get asked to help by ME charities because of my expertise in parallel fields. But the ME/CFS experts I have met so far do not think the borrelia connection is of interest. They are well aware of a lot of noise being made ( I am not sure what trafficking in two diseases means) but it never gets a mention at the scientific meetings I have attended. Maybe like me they would like to see some evidence in a form that can be judged for reliability. Without evidence for this 'reality' one has to remain agnostic. I do not know who the IDSA are and I suspect nobody in the UK with an interest in ME would. Whoever they are they do not seem very relevant to the discussion from a European perspective.
I am interested in all possible factors contributing to ME but I need to see some evidence to build on.
Jonathan Edwards: "I do not know who the IDSA are and I suspect nobody in the UK with an interest in ME would. Whoever they are they do not seem very relevant to the discussion from a European perspective"
Really?
You mean you are unfamiliar with who the IDSA are? That you are unfamiliar with reports that UK Lyme policy was basically a re-drafting of the 2006 Guidelines modified to allow for garinii and afzelii? That there is reportedly a great deal of dissatisfaction with that same UK policy, and that it is quite likely that many UK patients sick with a TBD are fairly confident they have ME/CFS?
That this same IDSA residue can be found pasted to Lyme policies throughout Europe? And that those same disenfranchised Lyme patients, one by one, country by country, seem to end up with an ME/CFS diagnosis?
To be so active in the ME/CFS community and to be so unaware of this connection is a remarkable accomplishment.
You REALLY never heard of the IDSA??? I can assure you they have heard of ME/CFS, because their physicians keep slapping their Lyme patients with an ME/CFS label..
The Facebook and online Lyme forums/communities are groaning under the weight of people told they have CFS or M.E, without any further investigation (Lyme, co infections or otherwise) who then go on to discover for themselves that they have Lyme, begin treatment for it and recover or improve significantly. I am in touch with very many people who this is the case for.
The CFS diagnosis is being bandied around and everyone gets tarred with its brush. All these patients cant be wrong. They are not post treatment lyme disease patients but people who have spent 5, 10, 15 or 20 years house, wheelchair and bedbound with an incorrect diagnosis, who have never even been offerd any sort of Lyme test.
I am curious, Dr. Edwards, if you were a ME/CFS clinician and not hamstrung by the NHS or insurance company oversight, and you had patients who had been sick for years and years and nothing seems to help them, but you are aware of the possibility of chronic Lyme disease, how would you proceed with your patients?
So... How to solve this?
What do you mean "the system is now so transparently corrupt"?Get everyone who has looked to publish. We need everything to be put on line for everyone to see. There should be a rule that any research investigation should be made publicly available. All the journals should be shut down. The problem is that biomedical scientists like brownie points. But the system is now so transparently corrupt that sooner or later it will collapse. The only question is what will rise from the ashes?
I would test all my patients for the available pointers to Lyme disease and compare with healthy controls and see if they were any different.
What do you mean "the system is now so transparently corrupt"?