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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...

Very surprising to see these statements exhibiting humility from Stone. Encouraging development.

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.

Long Covid is probably the same thing as ME/CFS.

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...

50% of ME/CFS patients don't have MS. If they did, half of us would ultimately be dying of untreated MS.

The claim that up to half of ME/CFS patients may also have MS. Is this not an irresponsible claim?

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...

Nothing new here.

The NIH should not be platforming this stuff.

I’m laughing at the thought of us building nests.

1980s called and asked for their idea back.

“the bastards don’t want to get better”