IMEA-New M.E. Association

[insearchof]

Dolphin

I expect a research foundation like his Nightingale Research Foundation to publish papers.

I expect researchers if they are to have a lasting legacy, to produce papers. I'm perfectly willing to accept in particular years, papers might not be produced. But to produce as little as he has since means his influence is not what it could be.

As I said, he has been running that foundation pretty much single handed for a number of years now. I note that you support the WPI, but I wonder how much support have you given to the Nightingale Foundation or for that matter, intend to in the future? None I suspect, but I am sure you will still EXPECT him to run his foundation, lecture to keep his profile high in order to have influence with the bodies you quote, do his reasearch and publish - all out of his own pocket and you will be there to criticize his efforts.


ISO

 

[insearchof]

Dolphin

Having to read context in a definition would make more sense in a short definition. A 15-page definition like http://www.nightingale.ca/documents/...inition_en.pdf shouldn't require so much context to be known by its readers such as it is designed for insurance cases

The definition is a codification - a summary of pre existing medical literature on ME to assist all clinicians with diagnosis

It was not designed for insurance cases any more than the medical history of ME was.

Another beautiful misconception

 

[Dolphin]

Dolphin

Having to read context in a definition would make more sense in a short definition. A 15-page definition like http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf shouldn't require so much context to be known by its readers such as it is designed for insurance cases

The definition is a codification - a summary of pre existing medical literature on ME to assist all clinicians with diagnosis

It was not designed for insurance cases any more than the medical history of ME was.

Another beautiful misconception

You were the person who said it had to be in context and then said:

Hyde also has a practice of patients that are almost exclusively engaged in litigious matters, which is another reason why he would insist on as much evidence of CNS dysfunction, including a positive SPECT before confirming a diagnosis.

I think many clinicians would read it that the diagnosis would be in doubt without such evidence of CNS dysfunction.

The proof of the pudding is in the eating as they say: if you can get health systems and researchers to use the definition in clinical and research situations, that suggests it is a practical definition. Until I see such evidence, I'm inclined to believe it probably won't be used generally clinically across health systems and may not be used much by researchers either.

 

[Dolphin]

As I said, he has been running that foundation pretty much single handed for a number of years now. I note that you support the WPI, but I wonder how much support have you given to the Nightingale Foundation or for that matter, intend to in the future? None I suspect, but I am sure you will still EXPECT him to run his foundation, lecture to keep his profile high in order to have influence with the bodies you quote, do his reasearch and publish - all out of his own pocket and you will be there to criticize his efforts.


ISO

I've given to various research funds in the past (at least five). If his Nightingale Research Foundation was producing the goods, I think there is a good chance I would donate to it also. I don't expect researchers to do many lectures. In the medical world, for so many things, one doesn't get far quoting random lectures - it's published work that tends to need to be referenced.

 

[insearchof]

Dolphin

You were the person who said it had to be in context and then said:

Hyde also has a practice of patients that are almost exclusively engaged in litigious matters, which is another reason why he would insist on as much evidence of CNS dysfunction, including a positive SPECT before confirming a diagnosis.

Yes that is correct - but just because that is true - does not mean that the Nightingale document was designed for insurance cases.

It was not. It was designed to help clinicans generally and to assist with research.

 

[insearchof]

ISO
I've given to various research funds in the past (at least five). If his Nightingale Research Foundation was producing the goods, I think there is a good chance I would donate to it also. I don't expect researchers to do many lectures. In the medical world, for so many things, one doesn't get far quoting random lectures - it's published work that tends to need to be referenced

.

Good on you Dolphin! Have him produce the goods all off his own back - with no support from the likes of you - but who demands publications etc - but is happy to jump on board when he get there.

And people wonder why it took 25 years for the discovery of XMRV - and it would not have come along had it not been for the Whittemores generous personal financial contribution and based on what you have just said, (given Mikovitz is now having trouble publishing) your support of WPI is shortly about to dry up - because they wont be producing published work in a suitable journal!

 

[Dolphin]

And people wonder why it took 25 years for the discovery of XMRV - and it would not have come along had it not been for the Whittemores generous personal financial contribution and based on what you have just said, (given Mikovitz is now having trouble publishing) your support of WPI is shortly about to dry up - because they wont be producing published work in a suitable journal!

That is misrepresenting what I said:

Going back to the point about Judy Mikovitz not be able to publish: that is this moment in time at with regard to XMRV. If the WPI only produces a handful of papers in the next 15-20 years, I won't be happy with it either and would stop donating to it.

 

[insearchof]

Dolphin,

I think it is pretty poor that funding support is withrawn on the basis of matters that are not entirely in the hands of the institutions themselves.


ISO

 

[Dolphin]

Dolphin,

I think it is pretty poor that funding support is withrawn on the basis of matters that are not entirely in the hands of the institutions themselves.

ISO

Firstly, I'm not sure I accept that premise that if a research institute only published a handful of papers in 15-20 years, that they could not have done things differently given the myriad of journals that are out there now.

One only has one life and one generally wants improvements in one's lifetime. One gives money where one thinks it will make a difference. If a research institute only produces a handful of papers in 15-20 years, one is perfectly entitled in my view to question whether it is the best use of the money.

But if you think the Nightingale Research Foundation is the best use of your money, nobody is stopping you giving or continuing to give money to them. As I said, personally I'm not inclined to give my money to them at this time given their lack of output in the past.

 

[insearchof]

Dolphin

You have valid points as to whom you choose to support.

What I dont accept however, is your expectations and criticism of an organisation that you have not and have no intention of supporting.


ISO