Is it worth explaining the difference between ME and CFS to the public??

[Bob]

My personal opinion about Hyde:

Hyde's work is very interesting, but I think that we need to remember that Hyde is one researcher, and that this is not a consensus definition, however excellent Hyde is at his work. It's also not a published or official definition.
I have a lot of respect for Hyde, but I do think that we need a consensus in the community before we can take his opinions as the final word.
I have a personal issue with ME only being sudden onset, because I know people with an illness that looks identical to my own illness, who became ill gradually.
But this is just my personal opinion.

I need to look at some of the other more recent ME literature now.

 

[Boule de feu]

How easy is it to get a Picker 3000 brain SPECT scan?

 

[insearchof]

How easy is it to get a Picker 3000 brain SPECT scan?

Ring a major hospital in Ottawa's neuro science department and find out. If they dont have one, I am sure they will be able to tell you where you can get one done.

Dont know what the costs are in Canada, but they are not expensive here.

 

[Boule de feu]

Ring a major hospital in Ottawa's neuro science department and find out. If they dont have one, I am sure they will be able to tell you where you can get one done.

Dont know what the costs are in Canada, but they are not expensive here.

I was thinking in terms of waiting time...

 

[insearchof]

Hi Bob

Now I am playing catch up to your posts.

I wont respond to all points, because of energy constraints and to save repitition. But some points are important and worthy of reapting.

Ramsay absolutely, consistently and categorically states that fatigue is the predominant feature in ME. He states this in the three different papers that I quoted from.
Nothing has been misquoted, presented out of context, or distorted, in terms of his quotes about fatigue.
Indeed, he says fatigue is one of the only features that is present in 100% of his patients, apart from a very few isolated individuals who had all the other features of ME but without fatigue. This, he suggests, was because they were in a state of remission.

Here's a quote, again, from a 1986 paper:


"The Myalgic Encephalomyelitis Syndrome"
A. Melvin Ramsay M.A. M.D.

The unique form of muscle fatiguability described above is virtually a sheet-anchor in the diagnosis of Myalgic Encephalomyelitis and without it a diagnosis should not be made.

http://phoenixrising.me/forums/showt...l=1#post176623
You can't get much more categorical than that.

Again, I refer to post #90 and the historical context of these papers with respect to PVSF. With regard to the 1986 research study, I again refer to the intention and focus of the study. The emphasis on muscle fatiguability was mentioned to denote it as one of the symptoms that could be used to distinguish it from PVFS where he has stated the ''fatigue'' with regard to PVFS is quite different. In its correct context (both in the documents themselves and with reference to historical circumstances/documents in support and the general body of historic medical literature) they cannont and should not be elevated to the status your are trying to give them: as the predominant feature.

I have made this point more than once and it appears that you have choosen to dismiss it in preference for selecting certain sentences and paragraphs. Thats fine. However for the sake of boring the pants off everyone in this thread, we should move on from this - but I would appreciate it if in future, you refrained from making statements that suggest that anything contrary to your view of matters constitutes a misrepresentation of the facts.

 

[insearchof]

I was thinking in terms of waiting time...

Not sure what your referring to here. Perhaps you would like to elaborate.

Do they have waiting lists in Canada for access to services like these?

 

[insearchof]

Again I believe there is a difference between muscle fatiguability and the fatigue described by the CDC definition. The CDC version of fatigue is more of an exhaustion and Ramsay's is more of a muscle weakness. I see that as a large difference.

Hi Floydguy

I am not certain I understand the distinction or why you see Ramsay as muscle weakness and CDC as exhaustion. Could you elaborate?

Thanks

 

[insearchof]

Hi Bob

I said:Hi Bob


I am sorry Bob, my comprehension of the article (1986) appears directly at odds with your own. Nothing more to say there.


Further, I note you say nothing about the historical context relating to the article which I point to at post #90 - that it fell within a confusing PVFS /ME mish mash period, which Ramsay subsequently acknowledged that his own errors there and emphasis - had contributed to and that this made things confusing. He went to great lengths subsequently to correct such.

Bob said in reply:


Well, Ramsay repeats himself in 1990, in relation to fatigue and ME, and I think he died in 1990 didn't he? So he seems to be of the same opinion very late in his career.

In 1986 as my post at #90 indicates - it explains his position in the context of PVFS and his errors which contributed to the mess there and how two years later in 1988, he reports setting out to clean that up.


In 1990 the study with Ramsay and Dowsett is completed and published. Again the I refer you back to the intent of the study - and other material I have previously discussed on that study -
earlier in this thread.


If Ramsay can be said to have repeated himself at all in 1990, it was to once again simply show how one element of ME (the nature of muscle fatigue) could be used to differentiate it from PVSFS - but not to elevate it as a prominent feature of ME. I again refer to context of both documents -1986 and 1990 and also, where they sit alongside a more extensive body of literature on the matter.


I do believe Ramsay did die in 1990, but obviously after the Dowsett/Ramsay study was completed.

But we can disagree about this, and let other people make up their own minds about this issue.

Yes agree with that.

I do acknowledge what you said about the "confusing PVFS/ME mish mash period", but I am only dealing with papers by Ramsay right now...
I will acknowledge anything that contradicts Ramsay in my further investigations.
I am not biased in any way about this... I don't have any agenda here except to establish the facts, and I am just presenting the information exactly as I find it.

I understand your only dealing with the Ramsay papers - but then, so was I.

I dont have an agenda either, than to establish the facts and get to the truth. I am also presenting the information that I have found.

The issue that I have raised is that the facts have been presented in an absolute way, and they do not coincide with Ramsay's literature.

On your present view, interpretation and understanding Bob.

But as you have pointed out above - we have divergent views on the Ramsay literature and we have agreed to let others make their own decision. So whilst you might object to presentation of facts in an absolute way, are n't you presenting your opinion (that they do not coincide with Ramsay literature) here in a similar fashion?

If the facts do not coincide with the historical literature on such crucial points that I have highlighted, then I can't see that they can be presented with such absolute certainty. I would be surprised if the latest research contradicts Ramsay on so many crucial issues relating to the definition of ME. But I have acknowledged that I have further reading to do.

Again, it is only your view of the matter - that suggests that the facts do not coincide with historical literature. Again, I thought we agreed that we would leave it there and let others decide.

I used the word 'misrepresented' carefully, not casually.
It does not imply that people are willfully or purposely attempting to distort the facts. It only means that the information has not been 100% accurately presented, if the literature by Ramsay is accurate.

Thank you for clarifying that Bob.

Again, I suggest to you, how accurate the information is - (ie has not been 100% accurately presented) is based on your own view and understanding of the Ramsay literature - that is all, and of course, there is a competing view point on the matter. As such, it might be better to say that the information appearing in this thread, appears to be odds with your own reading and understanding - not that it is or that it has been inaccurately presented or that the facts associated with Ramsay/his findings have been misrepresented.

Would that be fair?

Maybe I have been premature in saying this, but I have yet to see any evidence that I am wrong.

I understand that and thats ok.

I will come back to your comments on Nightingales and Hyde. Though someone else might like to address them too

I need a little break - will be back later.

 

[insearchof]

Hi Bob,

I was on my way out the door, and thought what they hey - I will respond to this quickly

Hyde's work is very interesting, but I think that we need to remember that Hyde is one researcher, and that this is not a consensus definition, however excellent Hyde is at his work. It's also not a published or official definition.

I have a lot of respect for Hyde, but I do think that we need a consensus in the community before we can take his opinions as the final word.

I agree with you Bob, that Hydes Nightingale document is not a consensus. It is a codification.

"Consensus" is an interesting word and the process usually involves a degree of compromise. In that process some things are lost in order to reach agreement. Not really ideal, I would suggest when it comes to identifying and diagnosing a specific disease or illness.

I really do not know (but can confer with someone more knowledgeable on the matter) - but how many areas of medicine - with respect to disease states - requires 'consensus' outside of and in addition to - the general scientific research/peer review process?

Why is a consensus needed if it means loosing some information that might be relevant or useful in a diagnostic or research setting - for the sake of keeping competing medical egos happy? Dont patients potentially loose out in this process?

A codification on the other hand, purports to summarise the literature.

A review of the codification by other ME experts might be useful and I think Hyde has publicly requested/called for such.


Just some early morning mumblings before leaving

 

[Boule de feu]

Not sure what your referring to here. Perhaps you would like to elaborate.

Do they have waiting lists in Canada for access to services like these?

Yes. It is not easy to get different services here.
Unless it is a matter of life and death, your name is put on a waiting list.
I know that there is a problem (shortage) with nuclear isotopes (maybe not relevant in this case).
Five years ago, I did get a brain SPECT can but I'm not sure if it is the one that is mentioned by Dr. Hyde.
I wonder if I should do another one to see if they could find something new.

 

[Bob]

...it might be better to say that the information appearing in this thread, appears to be odds with your own reading and understanding - not that it is or that it has been inaccurately presented or that the facts associated with Ramsay/his findings have been misrepresented.

Would that be fair?

Yes, that would be a constructive way to approach the discussion. Thank you for being so reasonable.

To be honest, I used that particular wording because I was feeling rather irritated that when I looked at the historic literature, it did not correspond to what I perceived was being presented on this thread. At first reading, it seems to contradict almost everything that has been said on this thread. But I agree that my wording was not very constructive, and your wording is far better!

But insearchof, I am not seeking to present any information here with an agenda.
I am simply presenting what I have read, and using it to question the information that has been presented in this thread.
If I had read other information, then I would have quoted whatever I found, as I did with Nightingale.


With regards to Ramsay and the question of fatigue... I just can't seen how you can possibly say that he didn't view fatigue as a predominant feature... I acknowledge what you are saying about the PVFS thing, and that his research papers had a specific purpose, and that he may have changed his opinion, but he included the information about fatigue in his actual definitions of ME, including the 1990 definition, as I have presented in my earlier post:
http://phoenixrising.me/forums/show...-to-the-public&p=176832&viewfull=1#post176832

Would you mind responding to that post please insearchof, if you don't mind?
If he changed his mind, then I'd like to read some literature about that, so I'll look out for it.

 

[Bob]

Hi Bob,

I was on my way out the door, and thought what they hey - I will respond to this quickly





I agree with you Bob, that Hydes Nightingale document is not a consensus. It is a codification.

"Consensus" is an interesting word and the process usually involves a degree of compromise. In that process some things are lost in order to reach agreement. Not really ideal, I would suggest when it comes to identifying and diagnosing a specific disease or illness.

I really do not know (but can confer with someone more knowledgeable on the matter) - but how many areas of medicine - with respect to disease states - requires 'consensus' outside of and in addition to - the general scientific research/peer review process?

Why is a consensus needed if it means loosing some information that might be relevant or useful in a diagnostic or research setting - for the sake of keeping competing medical egos happy? Dont patients potentially loose out in this process?

A codification on the other hand, purports to summarise the literature.

A review of the codification by other ME experts might be useful and I think Hyde has publicly requested/called for such.


Just some early morning mumblings before leaving

Well, peer review would be a good start. I don't mean that consensus needs to be reached with all members of the ME community. That would probably never happen!

I imagine that a codification requires a certain amount of selection and filtering of material, which might require some subjectiveness.
Hyde admits in his Nightingale definition that there is not a scientific consensus in all areas of his description of ME, but that he is expressing his own opinion with regards to certain specific issues.

 

[Boule de feu]

Hi Bob,

I agree with you Bob, that Hydes Nightingale document is not a consensus. It is a codification.

"Consensus" is an interesting word and the process usually involves a degree of compromise. In that process some things are lost in order to reach agreement. Not really ideal, I would suggest when it comes to identifying and diagnosing a specific disease or illness.

I really do not know (but can confer with someone more knowledgeable on the matter) - but how many areas of medicine - with respect to disease states - requires 'consensus' outside of and in addition to - the general scientific research/peer review process?

Why is a consensus needed if it means loosing some information that might be relevant or useful in a diagnostic or research setting - for the sake of keeping competing medical egos happy? Dont patients potentially loose out in this process?

A codification on the other hand, purports to summarise the literature.

A review of the codification by other ME experts might be useful and I think Hyde has publicly requested/called for such.


Just some early morning mumblings before leaving

I don't think that the specialists who did participate in writing the consensus would like to find out that they have big egos... I think they did it because they wanted to fix the big mess that was done by the CDC.

OR... Maybe ME is not as white or black as some people would like to think.
This is why a consensus was needed.

My doctor keeps telling me that medicine is more in the tones of grey... ;-)

 

[Boule de feu]

I would like to find out how many of us on this forum have received a ME diagnosis using the Brain SPECT scan.

It would be nice to figure out the proportions for each country as well : Australia, Canada, U.K., and U.S.A.

It would be interesting to have a poll on this subject.
Anyone interested?

 

[Bob]

How easy is it to get a Picker 3000 brain SPECT scan?

I believe that Byron Hyde is the authority on SPECT scans for ME.
And as insearchof said, he's in your part of the world, so you could contact him if you were interested in getting one done.
insearchof says that he's very expensive, but he might possibly be able to suggest how you might get a cheaper service.

Here is his Hummingbird website:
http://www.hfme.org/

 

[Boule de feu]

I have already contacted him... twice (a few years ago).
I was told that he was not taking new patients because of several conferences
and traveling he was doing at the time. They also told me that when he would
take new patients, it would be a very restricted numbers (was it 10? I can't remember)
since he takes his work very seriously and must spend a lot of time with each patient.
So, it was very unlikely that he would be able to take me as his patient. =-(

I envy the ones who were able to see him and get a diagnosis.

I believe this is a better link on how to become a patient:
http://www.nightingale.ca/index.php?target=researchpatients

They have a new section on a possible Skype interview.
Maybe I should try this.

 

[Bob]

I would like to find out how many of us on this forum have received a ME diagnosis using the Brain SPECT scan.

It would be nice to figure out the proportions for each country as well : Australia, Canada, U.K., and U.S.A.

It would be interesting to have a poll on this subject.
Anyone interested?

Personally, I don't think that a poll would be very helpful, because only those who have had a SPECT scan would probably take the time to respond, and so it wouldn't be an objective poll.

I could hazard a guess that in the UK about 0.1% of us have had SPECT scans. But that is a guess. We certainly would never be offered a SPECT scan on the NHS for ME/CFS.


I can imagine the conversation:

Me: Erm, I believe I've got ME, could I have a SPECT scan please?

Doc: Er, what you mean you've got ME?

Me: Erm, it's otherwise known as CFS.

Doc: Oh, CFS. And you want what scan?

Me: A SPECT scan.

Doc: What's that?

Me: *Very Long Answer*

Doc: Oh I don't think you need one of those.

Me: But the literature about ME suggests that it can diagnose ME with certainty.

Doc: Well I wouldn't believe everything you read.

Me: So can I have one?

Doc: I doubt it.

Me: What do you mean?

Doc: We don't have any scanners.

Me: What, none?

Doc: No, not in the NHS.

Me: Well can I get one privately?

Doc: I don't know, but to be honest I would stop worrying about it. Have you thought about having CBT?

Me: Er, no, I've had it already and didn't find it helpful.

Doc: I don't know why. CBT is very helpful for CFS.

Me: Well, it's not actually. The PACE Trial proved that, even though it was a flawed and badly constructed study which was specifically designed to show CBT in a positive light.

Doc: I think you spend too much time reading and worrying. Have you thought about taking up a sport or another hobby?

Me: Erm, no, I'm not well enough. Haven't we discussed that?

Doc: oh, yes.

Me: *sigh* So I can't have a SPECT scan then?

Doc: No.

Me: *sigh*

 

[Bob]

I have already contacted him... twice (a few years ago).
I was told that he was not taking new patients because of several conferences
and traveling he was doing at the time. They also told me that when he would
take new patients, it would be a very restricted numbers (was it 10? I can't remember)
since he takes his work very seriously and must spend a lot of time with each patient.
So, it was very unlikely that he would be able to take me as his patient. =-(

I envy the ones who were able to see him and get a diagnosis.

I believe this is a better link on how to become a patient:
http://www.nightingale.ca/index.php?target=researchpatients

They have a new section on a possible Skype interview.
Maybe I should try this.

Sorry to hear that, Boule.
Do you think it could be productive to phone his office to ask if they know anyone else who can offer a SPECT scan analysis?
It might be worth a try.

 

[Nielk]

No one in the U.S. could have gotten a diagnosis of M.E. and that's because it doesn't exist here.
Even my own doctor: Dr. Enlander who bases his criteria of CFS based on DR. Ramsey, calls it CFS!
He wrote a book on Chronic Fatigue Syndrome based on Dr. Ramsey's findings but still calls it CFS because M.E.
does not exist here.

 

[insearchof]

Yes. It is not easy to get different services here.
Unless it is a matter of life and death, your name is put on a waiting list.
I know that there is a problem (shortage) with nuclear isotopes (maybe not relevant in this case).
Five years ago, I did get a brain SPECT can but I'm not sure if it is the one that is mentioned by Dr. Hyde.
I wonder if I should do another one to see if they could find something new.

If your health had deteriorated and you are able to access one, then I would consider it.

Dr Hyde might be able suggest someone who could also interpret the film from the scan for you.