I'm not sure what the forum rules are regarding posting people's contact details but the two corresponding authors' email addresses are listed at the bottom of the first page of the Nature Comms article.
To you the injustice is obvious since we have the lived experience of inhabiting in a body that crashes when it tries to move. Hard to prove to others without that lived experience that injustice has taken place when we have no understanding of biological mechanism or proof that exercise is...
I couldn’t agree more @JemPD. We have no solid evidence of a pathophysiological mechanism. The cringeworthy “5000/6000/9000 published papers” line needs to stop. I think a documentary at this point would be a disaster for us. SW et al. would simply need to point to the unreplicated mess of low...
You're right. This goes to the heart of the problem. He speaks like somebody who doesn't have any contact with clinical reality. And because he has no clinical experience, he has no idea how incorrect the things that he says sound.
These results ARE being used to establish a fake diagnosis of Lyme disease and expose patients with diagnoses like fibromyalgia and ME/CFS to long-term antibiotic therapy for a disease they don't have. I know this for a fact but this is all I can say publicly.
They are the very definition of a scam because they do not accurately diagnose a disease yet are being marketed as diagnostic of dysautonomia. These tests are not just being sold as research assays. They are being sold to patients and clinicians with the clinical interpretation being that these...
Yes, Celltrend tests are fake. They measure antibodies that are also found in very similar distributions in normal controls. Therefore, it is highly unlikely that these antibodies cause disease. There are multiple threads about this going back years.
Exactly. We'd be dropping like flies and we'd have MRI evidence of disease. No one would be questioning our disability. We wouldn't even be on this forum.
I'm surprised that the German government has done nothing to clamp down on commercial labs selling fake tests to patients like Arminlabs and Celltrend.
I think ultimately the only thing that will make a difference is incontrovertible and replicated evidence of organic pathology. Telling the medical profession that they are wrong while citing political statements from 2006 and personal opinions of some doctors like Komaroff is never going to...
There is only one well-known anecdotal report of a person being rediagnosed with MS and responding to Copaxone as per social media reports. The OMF is latching onto every anecdote as usual. I understand the desperation (aren't we all desperate?). That does not give you the right to spread...
I think the way this is phrased (already discussed in a previous thread when a draft version was first posted) is counterproductive and may damage us further.
Elsevier is not going to take these weak arguments seriously. Patient advocacy groups have been making the same arguments for 40+ years...
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