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News from Aotearoa/New Zealand and the Pacific Islands
- Thread starter Hutan
- Start date
Ravn
Senior Member (Voting Rights)
Yes, just a teeny tiny bit of biomarker hype happening here 
More interesting but with much less detail it was mentioned that they’re planning to study cell-free dna
This doesn’t seem to have been looked at much in ME if the tag ‘cell-free dna’ is anything to go by
I checked the donation website for their current projects but cell-free dna doesn’t look to map onto either of them? So an additional project?
More interesting but with much less detail it was mentioned that they’re planning to study cell-free dna
This doesn’t seem to have been looked at much in ME if the tag ‘cell-free dna’ is anything to go by
I checked the donation website for their current projects but cell-free dna doesn’t look to map onto either of them? So an additional project?
Tags: cell-free dna (and neutrophil extracellular traps)
Mij
Senior Member (Voting Rights)
Teen was told the crippling stomach pain she suffered was in her head- it wasn't
A leading vascular surgeon is angry and frustrated that patients like Amelia Turner are told their symptoms are eating disorders before a correct diagnosis is made. He says the collateral damage of being believed is far-reaching
“There is a chunk of our health service actively resisting this diagnosis and treatment upfront.”
“What that means is patients are told their symptoms are the result of an eating disorder. It is true these patients lose weight; their weight loss can be dramatic and frightening. And the majority are young women. But they are not starving themselves to lose weight. The are not eating because it’s painful to eat. This is a physical and anatomical issue, not a mental health issue. Tragically, the more weight they lose, the more painful the AVCS symptoms because fat is a useful buffer to keep structures apart and reduce compression.”
In a statement to RNZ, Te Whatu Ora says AVCS, also called median arcuate ligament syndrome (MALS), can be a complication of Ehlers-Danlos Syndrome. It also occurs in other conditions and may arise as a consequence of weight loss.
Te Whatu Ora says a “very careful assessment of how we diagnose and treat MALS in New Zealand is required because the available evidence is of low quality, with no published randomised controlled trials”.
A leading vascular surgeon is angry and frustrated that patients like Amelia Turner are told their symptoms are eating disorders before a correct diagnosis is made. He says the collateral damage of being believed is far-reaching
“There is a chunk of our health service actively resisting this diagnosis and treatment upfront.”
Chris HoldawayVascular surgeon at Waikato Hospital.
“What that means is patients are told their symptoms are the result of an eating disorder. It is true these patients lose weight; their weight loss can be dramatic and frightening. And the majority are young women. But they are not starving themselves to lose weight. The are not eating because it’s painful to eat. This is a physical and anatomical issue, not a mental health issue. Tragically, the more weight they lose, the more painful the AVCS symptoms because fat is a useful buffer to keep structures apart and reduce compression.”
In a statement to RNZ, Te Whatu Ora says AVCS, also called median arcuate ligament syndrome (MALS), can be a complication of Ehlers-Danlos Syndrome. It also occurs in other conditions and may arise as a consequence of weight loss.
Te Whatu Ora says a “very careful assessment of how we diagnose and treat MALS in New Zealand is required because the available evidence is of low quality, with no published randomised controlled trials”.
Jonathan Edwards
Senior Member (Voting Rights)
Which would suggest that statements such as " The are not eating because it’s painful to eat. This is a physical and anatomical issue, not a mental health issue. Tragically, the more weight they lose, the more painful the AVCS symptoms because fat is a useful buffer to keep structures apart and reduce compression.” may have no very clear foundation.