The parents of Merryn, who died of ME in 2017, speak out

[Learner1]

WTF is his problem? Who is this guy and what is his motive for doing this? How do we stop him?

He's a PhD student. Here is his description of what he is doing along with his email, if you care to educate him.

https://www.ntnu.edu/employees/henrik.vogt

 

[Gingergrrl]

He's a PhD student. Here is his description of what he is doing along with his email, if you care to educate him.https://www.ntnu.edu/employees/henrik.vogt

@Learner1 I looked at the link and if I am reading it correctly, it looks like he is a doctor (MD) in Norway who is now getting his PhD. After reading it, I cannot imagine that anything I could say would change his views. He reminds me of the Westboro Baptist Church who picket the funerals of soldiers and Matthew Shepard. It is hateful and as someone else said in this thread, I don't even want to give him more oxygen or detract from Merryn. Better to just ignore him.

 

[alex3619]

It is a rare disease according to this paper from NZ:
http://www.newshub.co.nz/home/healt...-death-after-rare-disease-takes-her-life.html

I sent the writers this:


Hi, just to let you know the epidemiology of ME is variously about 0.2% to 2%, though a few studies are higher. This is not rare. Its common. Its just commonly ignored or misdiagnosed, and under-reported. So its between one in 50 to one in 500 people. I think the 0.2% is more accurate and without misdiagnoses, but its still common.

Alex Young, B.Sc., B.Inf.

 

[brooke]

the NIH lists ELEVEN deaths for CFS in 2015.... Other immune illnesses (RA, MS, etc.) have deaths listed in the thousands, and have significantly more funding than CFS.. Documenting number of deaths - including suicides - has a legitimate purpose for increasing awareness & funding for CFS... If I ever euthanize myself, you better believe that I want it documented and for the NIH to be informed.

@ebethc how did you find this number?
I wrote about this yesterday, and want to make sure I get it right.

https://medium.com/@missbrooke/two-...he-medical-community-take-notice-f21e266ea422

 

[ebethc]

@ebethc how did you find this number?
I wrote about this yesterday, and want to make sure I get it right.

https://medium.com/@missbrooke/two-...he-medical-community-take-notice-f21e266ea422

this shows United States mortality (also spending):
https://report.nih.gov/categorical_spending.aspx *
* NIH = National Institutes of Health, U.S.; does not include private money

I also used this to calculate U.S. NIH per patient spend (i had to look up # of patients)
CFS $8 per patient, based on 1m patients*. 11 deaths (2015)**
* there are more, but that's how many the NIH believes there are
** suicides are clearly not included in this number

For comparison, I did the same for other immune illnesses (disease / per patient spend / total # of patients / 2015 deaths)

• Crohn's $85, 780k patients, 1826 deaths
• Lupus $65, 1.5m patents, 3287 deaths
• MS $252, 400k patients, 6101 deaths
• Rheumatoid Arthritis, $73, 1.29m patients, 8892 deaths

 

[brooke]

@ebethc Oh wow, thanks for all this info

 

[Countrygirl]

Channel 5 news have interviewed Merryn's family this morning and will be broadcasting the story this evening on their news sometime after 5 pm.

Channe 5 news contacted us and have been round this morning to film a piece on Merryn. It should be in the channel 5 news at 5 and 6.30pm this evening.
We hope we’ve done you justice darling and all the other M.E. patients too xxx

 

[ebethc]

@ebethc Oh wow, thanks for all this info

couple of notes:
1) these numbers are taken from individual line items... eg, Crohn's line item in the NIH budget... However, there's a separate line item for Inflammatory Bowel Diseases, and since there's no way to break this out for Crohn's patients, I left the generic line item out of the calculations... The numbers I provided are the MINIMUM NIH spend, and you might want to note that somewhere...CFS, of course, is the exception... The only line that applies to CFS is the actual CFS line item.. If you open the link that I provided, and scan the budget, you'll see what I mean... PM me if you have more questions

2) more realistic estimates of CFS # of patients are 2m to 2.5m, so the $8 per patient is actually more like $4 per patient or less.. However, the NIH estimates 1m so I wanted to use their numbers to be consistent... I think it's worthwhile to note that the # of patients is controversial, and it is likely much worse than it looks in terms of budgeting. Same goes for estimated deaths by CFS, ie, numbers are WAY underrepresented.

 

[Countrygirl]

http://metro.co.uk/2018/04/03/mothe...ng-daughter-merryn-crofts-prove-real-7436012/

Mother releases pictures of dying daughter Merryn Crofts to prove that ME is real

Richard Hartley-ParkinsonTuesday 3 Apr 2018 6:44 am

Merryn Crofts had just turned 21 when she told her mother ‘I’ve got to be getting off now’ before she died (Picture: MEN) A mother has spoken out about seeing her daughter waste away from a condition that some medical professionals say does not exist. Merryn Crofts died 10 days after her 21st birthday weighing less than six stone.

Her mother Clare said that Merryn from Norden, Rochdale, had spent the last three years in her bed in pay suffering from myalgic encephalomyelitis – ME. Clare came to the conclusion that her daughter had ME after carrying out her own research, but was met with resistance from doctors and other medical professionals. She released these pictures to prove them wrong. She said: ‘Merryn was passionate about raising awareness and understanding of ME.


Read more: http://metro.co.uk/2018/04/03/mothe...merryn-crofts-prove-real-7436012/?ito=cbshare

Twitter: https://twitter.com/MetroUK | Facebook: https://www.facebook.com/MetroUK/

 

[FMMM1]

I sent the writers this:


Hi, just to let you know the epidemiology of ME is variously about 0.2% to 2%, though a few studies are higher. This is not rare. Its common. Its just commonly ignored or misdiagnosed, and under-reported. So its between one in 50 to one in 500 people. I think the 0.2% is more accurate and without misdiagnoses, but its still common.

Alex Young, B.Sc., B.Inf.

Here's the European definition of a rare disease "A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000" [from Wiki]. Alex is correct; ME/CFS does not meet that definition unless it's a mix of a whole lot of rare diseases.