For those who missed the IOM workshop yesterday
'A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes '
it can be accessed again not sure how long for here
Having listened to the videocam live there were many things that interested me.
Ben Luft's presentation was the most significant his comments later reminding everyone that Lyme Disease is a Relapsing Borrelia really sums things up.
All the babble from Wormser and Krause is irrelevant just because they haven't recognised this in their research does not prove that it is not the case - listen to the scientists!
The other significance of Luft's presentation was on the Genomic aspects of the 13 strains he looked at. Explaining why some disease is more aggressive and also why there are the problems over testing and the benefits of using this knowledge in the future.
We in the Lyme World know well the discrepancies on the studies presented by Aguero no less the circular reasoning in the Bacon et al ie that a positive blood test was needed to access the study so the study can hardly claim that it thus proves nearly 100% sensitivity in the conclusion.
Because of the lack of Lyme Doctors allowed to present these statements were allowed unchallenged, will the panel use their brains and really listen to what Luft is saying?
Well if the summing up by Walker was anything to go my probably not, he was still babbling about false positives when we in Lymeland know only too well it is false negatives that do the most harm.
Walker couldn't resist in mentioning 'unvalidated or unorthodox' tests sorry my words can't be sure what words he used - this is unrealistic to have mentioned this in summing up when there was no discussion presentation backing up his remark.
Too lump any and every test not done by our Health Authority as being not valuable to the clinical diagnosis when the Health Authority tests Elisa and Western blot clearly are limited in what they can show is irresponsible.
Pam Weintraube gave an excellent presentation as always available on her Facebook here asking for the two medical sides to come together in the interests of patients. It certainly seems that many of the best researchers are already together in a middle ground in recognising that all is not known about this formidable disease and it is too soon to be dictating rigid protocols.
Thanks to Daniel Cameron and Sam Donta for the searching questions they achieved a lot despite not being allowed to present fully.
Thanks also to the patients and Patient advocates for their poignant stories and searching questions.
The Paediatrician sorry not sure his name gave a very powerful presentation reminding the panel that with children we were sentencing them not just to a few years but 60/70 years of chronic illness and also reminding everyone that they are not small adults but that their CNS was not developed as in an adult and their illness therefore does not present in the way of an adult.
Altogether there was much good science that was heard today supporting ILADS views but were the right people listening and will they transcribe that so that science and treating patients can benefit?