News from Aotearoa/New Zealand and the Pacific Islands

[Trish]

Am I missing something?
Is the latest idea in certain circles that hEDS gets misdiagnosed as ME/CFS?

Sarah Boothby is a bereaved mother trying to be helpful so others may be saved Maeve's awful fate. I sympathise and honor her intentions, but wish she would not venture in to areas where she isn't an expert such as diagnosis and hEDS. Nobody, however well intentioned, should be giving medical advice on social media.

 

[Jonathan Edwards]

Is the latest idea in certain circles that hEDS gets misdiagnosed as ME/CFS?

That sort of idea has been around for at least 5 years now.
This is an example of the worst sort of folklore crossed wires.
Unfortunately, there are back channels where this sort of conversation goes on all the time.
Moreover, high visibility 'expert' physicians, especially in the USA, including Bateman Horne, feed the confusion, as do gastroenterologists throughout Europe.

 

[Chandelier]

Sarah Boothby is a bereaved mother trying to be helpful so others may be saved Maeve's awful fate. I sympathise and honor her intentions, but wish she would not venture in to areas where she isn't an expert such as diagnosis and hEDS. Nobody, however well intentioned, should be giving medical advice on social media.

Beautifully put, thank you, Trish.

That sort of idea has been around for at least 5 years now.
This is an example of the worst sort of folklore crossed wires.

What a misery.

To summarize, the hEDS diagnosis is detrimental for

- the patients.
A wrong aetiology won’t get you anywhere but into the hands of fringe medics.
This might lead to dangerous procedures like stellate ganglion block
Mentioning a diagnosis of hEDS could also worsen your standing with doctors.

- the EDS patients, as I have learned thanks to the Instagram campaign by the Collagen Advocacy Network:

"Before a spinal fusion, I told my anesthesiologist that I had a rare form of EDS.
He said I have patients with EDS all the time and have never seen any complications'.
I woke up with multiple stitches in my throat from a tear due to the intubation."
-Classical Ehlers-Danlos Syndrome Patient

"I went to the ER for severe pain in my throat. The ER doctor said it's GERD and that it's very common in hEDS.
I explained I had VEDS, but I was sent home anyways.
The next day, after choking up blood, I returned to the ER.
I had a tear in my esophagus."p
-Vascular Ehlers-Danlos Syndrome Patient

That’s a pretty bad record in my book.

 

[Ravn]

Don't know if this has been posted?

Dysautonomia NZ Foundation.

They have a POTS GP guide. Two mentions of ME/CFS:

1. listed as an "associated condition"
2. under Differential Diagnosis it says "Orthostatic intolerance without tachycardia, including in ME/CFS"

 

[Jonathan Edwards]

They have a POTS GP guide.

It looks like an open ended invitation to GPs to diagnose POTS based on a muddle of vague indications. There is apparently a Malmo POTS score that looks a nonsense.