IMEA-New M.E. Association

[insearchof]

Hi Angela

1. Whilst I appreciate your short on time and energy just now, perhaps when you have it you can take the key differences between each for us. As I said, I have read them and failed to see glaring differences. I am not asking for a blow by blow analysis, just the nub of the matter, in the same way I was able to provide for you re CCC CFS non application to ME. Being quite certain of the differences, I am assuming, that this should not be too hard for you.

2. No matter how much tweaking was done to CCC CFS, it still relates to CFS not ME and it requires an exclusionary operation. ME does not.

3. I am uncertain what you mean that ME definitions are exclusionary for other conditions. Perhaps you could elaborate on that, as I have never seen any requirement for such, which leads me to believe that I do not quite understand what it is your trying to convey. Perhaps with further detail this could be made clear. CFS definitions however, do require that.

4. Im sorry Angela, it seems that you have misunderstood what I was saying.

I did not say ME was definitely unlike other conditions. In point of fact, I think I said that there are many conditions that have similar symptoms. What I did say though, is that medicine identifies key characteristics of some illnesses so as to distinguish them from one another, for the purposes of classification and clinical diagnosis. If it was not so, they would not be able to say - yes this is ME and not MS. This is Lupus and not CFS and so on.

I once again suggest to you, that from my observations -the difficulty people seem to have in not appreciating the distinctions, is their failure to understand this very point. They remain focused on the symptoms, instead of then moving towards the key criteria.

When people remain stuck on symptoms alone, many illnesses look alike and in such circumstances, I can understand that ME might seem very elusive or as you suggested, a holy grail. But thankfully, because of the way medicine operates, ME is neither elusive or the holy grail you suggest it to be.

5. I am not and did not ask you to accept on trust or otherwise, that I was working with a scientist on ME. However, what I do - in my spare time and with the little health I have, to advance the lot of ME or anything associated with it- is my own business. I am not an org or holding myself out to represent anyone. Therefore I do not seek your trust, support or anyone elses. I am not asking anything from you or anyone else here with respect to ME or anything else. I am therefore under no obligation to you or anyone else, of any kind. All I am doing, is doing what I can, when I can, with what I have - just like you I suspect.....putting your efforts into what you believe in. No more or less.



6. The Nightingale document is essentially nothing more than a codification of existing literature - a summary of what is. Without it, physicians and researchers would simply refer to the body of medical literature. That document just pulls it together. Therefore I question whether it requires publication and peer review, because it would simply represent a peer review of existing already published, peer reviewed litearture. I may be wrong. If so, the document can be set aside and research can be conducted on the existing body of ME literature. Therefore, I do not subscribe to the view that patients and carers are not in a position to support ME research.

In point of fact, patients and carers can do, whatever they feel feel empowered to do. Personally, I feel all of us, need to stop taking on the rubbish thrown at us (ie credibility attacks) and start to foster and invest in our self belief. When ME and CFS patients start to do that and believe that their contribution - however small, is important, needed and can make a difference....... then the obstacles we have seen for so long - will begin to fade.

You only have to look at some of what has taken place with XMRV in recent times, to see this.


ISO

 

[eric_s]

Personally, I feel all of us, need to stop taking on the rubbish thrown at us (ie credibility attacks) and start to foster and invest in our self belief. When ME and CFS patients start to do that and believe that their contribution - however small, is important, needed and can make a difference....... then the obstacles we have seen for so long - will begin to fade.

You only have to look at some of what has taken place with XMRV in recent times, to see this.


ISO

YES. Very well asid. Sometimes it's necessary to respond to an attack, but don't be distracted. If we use the power we have as a large community and advance our cause there will soon not be any base for such attacks anymore and so they will be a thing of the past. We need to understand we have the power to change things and start doing it on a new scale.

One thing that is free and easy and everyone can do, for example, is to sign up on the WPI's Anida page or with any ME/CFS organisation you like that does not charge a membership fee. 200'000 names on a list look much different than 500.

 

[Bob]

There seems to be only one major difference of opinion here...
There are those who would like to push for an immediate change to a highly selective and exclusive ME criteria, because anything else would continue the abuse that ME patients suffer.
And then there are those who think it would be more pragmatic, and realistic, to get governments to agree with incremental changes based on the 'CFS'-diagnosed community in the USA, and the 'CFS/ME'-diagnosed community in the UK. (Both the CFS and CFS/ME communities will include 'ME' patients, as diagnosed by stricter criteria).

 

[Dolphin]

I dont know what you or ''your friend'' means when they say he takes poetic license to describe a lot of what he says. Is your friend a world renowned ME expert and so, in a position to make that call ? I very much doubt it.

My contact reminded me of the following claim which I believe he has made on more than one occasion:

http://grubstreet.ca/articles/interviews/byronmhyde.htm

GS What are your hopes for the Nightingale Foundation?

BH Id love to raise $1.2 million dollars. The British government has asked me to come to England. It promises 15 million pounds to set up a foundation, such as I have in Canada, to examine the ME patients, in England.

I told them that number one, I didnt trust governments to come across with money or hire a staff and set up a foundation. Ive at least two university students whove offered to house me, but I thought, if I give up my practice here, I cant afford to wait for two years for the money to come or not.

If I had $1.2 million pounds or dollars, I could not only set up the foundation, in the UK until we did get funding. That amount of money would also allow me to come back to Canada and set up at the university here as well to also properly research these people.

[..]

** This is a verbatim transcript of a taped interview, given by Dr. Hyde, on 8 June 2008, and vetted by Dr. Hyde, on 27 June 2008.

 

[Dolphin]

I want to see evidence before accepting some of the things he says. Tests are not always as good in practice as they are in theory. And when one is dealing with medical agencies, they tend to expect peer-reviewed evidence

As for peer reviewed evidence on Spect machines - there would be quite a bit. Spect machines look at the brain and its functions, have been around for a long time and have been accepted as picking up CNS dysfunction quite well (save for when there is a problem with the machine or the way the scan is taken). You even posted evidence of this in the other thread as it related to PWCFS!

So I really dont understand why you keep going on about wanting scientific peer reviewed evidence about the reliability of a spect scan machine. Really dont understand what your point is I am afraid.

It is a pity we are having to repeat ourselves on two threads but those are rather pointed comments so I want to respond.

X-rays find things in the body, CAT scan find things in the body but they are pretty useless for diagnosing ME or CFS.

Peer reviewed data on SPECT scans in general tell us little about how good they will be in ME or CFS patients.

This is from one of those papers you refer to that I posted:

SPECT and MR also appeared to differ in their sensitivity
to changes in symptoms in patients with CFS. In the three
patients who had repeat SPECT studies after clinical
improvement, 60% of defects, on average, had resolved,
and few new defects were observed. In the one patient who
was scanned twice without clinical improvement, the number
of defects was similar in both studies. MR findings, on the
other hand, were unchanged in all patients who had repeat
studies, regardless of any clinical improvement.

This suggests the number of defects does correlate with severity.

And that defects can appear and disappear.

We do not have data on how accurate the tests will be on any single tests or on a few tests. Also in most health systems one may only get one test.

Also, as I said, 20% of the healthy controls showed up positive.

In the second paper, the location of the abnormalities were generally similar in the CFS and depression groups.

For a test to be good, one needs specific differences, not general differences. For example, it is true to say that men are taller than women on average. However that doesn't convert easily into a diagnostic where one easily say somebody is male or female based on their height.

I am now going to look through some of your messages which I haven't all read yet.

 

[insearchof]

Hi Bob

There are those that would like to push for an immediate change to a highly selective and exclusive ME criteria

Bob, every medical classification is and must be highly selective and exclusive.

Please acknowledge fact.

To suggest that ME is somehow different on any level by employing terms such as 'highly selective'' or ''exclusive'' is not factual or helpful. It is inflammatory and feeds on peoples emotion and fear.

ME is only a selective or exclusive criteria to every other person on the planet that has ANY other illness.

Again, ME is not CFS and the CFS community is free to do whatever they like to CFS definitions so long as they do not include any reference to ME.
Can you imagine the MS community tolerating the CFS community wanting to reference MS in a CFS definition?

 

[insearchof]

Originally Posted by insearchof
I dont know what you or ''your friend'' means when they say he takes poetic license to describe a lot of what he says. Is your friend a world renowned ME expert and so, in a position to make that call ? I very much doubt it.
My contact reminded me of the following claim which I believe he has made on more than one occasion:

http://grubstreet.ca/articles/interviews/byronmhyde.htm


GS What are your hopes for the Nightingale Foundation?

BH Id love to raise $1.2 million dollars. The British government has asked me to come to England. It promises 15 million pounds to set up a foundation, such as I have in Canada, to examine the ME patients, in England.

I told them that number one, I didnt trust governments to come across with money or hire a staff and set up a foundation. Ive at least two university students whove offered to house me, but I thought, if I give up my practice here, I cant afford to wait for two years for the money to come or not.

If I had $1.2 million pounds or dollars, I could not only set up the foundation, in the UK until we did get funding. That amount of money would also allow me to come back to Canada and set up at the university here as well to also properly research these people.

[..]

** This is a verbatim transcript of a taped interview, given by Dr. Hyde, on 8 June 2008, and vetted by Dr. Hyde, on 27 June 2008.

Hi Dolphin -

Perhaps I am a little more cognitively challenged today, but I fail to see the relevance of how that post establishes poetic licence or anything else really, other than perhaps that Byron did not have 1.2 million dollars of private savings to help him set up the foundation, relocate and negotiate a transitional period to keep the doors of the foundation open until government funding come through.

Could you please explain this further, because right now its looking like another thinly veiled attempt at a character assassination of one of very few, ME experts.

For those of you unware, Dolphin has pointed out on the other thread - that he/she has problems with what he/she refers to as hero worship that he/she sees being accorded to Hyde.

I have already stated elsewhere, and will repeat -that I did my own extensive reading and research of historical ME literature. I did not simply accept Hydes writings, nor did others I know.

It seems to me, that when you jump into this topic with little or no knowledge, there is an obvious inability to hold a discussion with those who have. What happens is, that little bits of knowledge are taken out of context and general ignorance does not allow for a fuller discussion. It is understandable that people who lack this knowledge and or are unable to appreciate it in a contextual setting, would attempt to hijack the focus by attacking the credibility of leading authorities in the field.

I do not mind an examination of scientific contributions by scientists this should be done, but with a focus on their work and within context.

However, there is no room for grubby suggestion, speculation or inferences or personal attacks -associated with such people - who, it pays to remember, know a hell of alot more than any one of us.

ISO

 

[Bob]

Hi Bob

There are those that would like to push for an immediate change to a highly selective and exclusive ME criteria

Bob, every medical classification is and must be highly selective and exclusive.

Please acknowledge fact.

To suggest that ME is somehow different on any level by employing terms such as 'highly selective'' or ''exclusive'' is not factual or helpful. It is inflammatory and feeds on peoples emotion and fear.

ME is only a selective or exclusive criteria to every other person on the planet that has ANY other illness.

Again, ME is not CFS and the CFS community is free to do whatever they like to CFS definitions so long as they do not include any reference to ME.
Can you imagine the MS community tolerating the CFS community wanting to reference MS in a CFS definition?

ISO, I worded my text badly, and so I didn't successfully convey the point that I was trying to make.
I do acknowledge your 'fact' that ME is an exclusive and specific disease. Or at least I agree that it has specific, but fluctuating, symptoms, and possibly a single cause.

The point that I was trying to make, was that some people want to push for 'ME' to be immediately and widely recognised and treated by governments, in a practical and political sense. (At the moment 'ME' is not recognised by governments or medical professionals, in a practical or political sense, at least in the UK and USA.)

I don't personally disagree with this aim, but I question how successful it would be to get governments to totally and massively change their approach to 'ME' overnight. My opinion is that we would have a better chance of making changes for the ME patient community, by pushing for incremental changes to the way 'CFS' is diagnosed. I believe that this would be a more likely way to create successful changes for the 'ME' community in the short term, as we move towards more exclusive and selective criteria for ME patients within the CFS-diagnosed communities. I believe that changes in the way CFS or CFS/ME is diagnosed, will help a wider number of CFS/ME researchers, scientists and the medical profession to carry out more effective research and treatment for ME patients in the long run.

You clearly don't agree with me because, understandably, you view the mixing up of CFS and ME as a travesty.

But the 'CFS'-diagnosed community has loads of (undiagnosed) ME patients. So what happens to the CFS-diagnosed community will affect the ME patient community.

I believe that the political changes you want for ME will come from the CFS-diagnosed community (which includes ME patients), rather than from an enormous step change whereby ME will suddenly be fully recognised, politically.

I acknowledge that you don't agree with me here.

 

[insearchof]

Dolphin,

It is very unfortunate that double threads on these matters are running.

I find it even more unfortunate that you post a response reiterating a position, that I have already addressed and or doing so, without first reading my comments which might save reading and additional repetitive replies.

Following on from my last post to you, whilst focus should be on ME scientists work (SPECTS), it is important, (as with all things) to ensure that it is examined in its correct context to avoid misconceptions.

However this aspect of Hydes work, has been taken entirely out of context and set up as the major stumbling block of ME and Hydes definition (which as previously stated is not a definition at all).

As stated in this thread and on the other one:

1. Spect scans are not used as a single diagnostic tool for ME

2. Spect scans are not used exclusively

3. Spect scans are only one of a number of tests used to arrive at the diagnosis of ME

4. XEON SPECT, PET, QEEG, MRI and neuropsych testing are other tools that show damage to the brain and evidence of CNS dysfunction. Some are more useful than
others in certain circumstances. Hyde has discussed this.

5. A diagnosis in ME, as well as other areas of medicine is based on:


(i) Presentation of symptoms
(ii) Identifying key criteria to distinguish one possible illness from another giving rise to possible considerations for a diagnosis
(iii) Adopting tools in an attempt to confirm the considered diagnoses


So whilst it is true Dolphin, that X-rays find things in the body, CAT scan find things in the body but they are pretty useless for diagnosing ME or CFS ....they are equally useless to diagnose anything when used in and of themselves, without recourse to a. patient history of symptoms. b. a physicians knowledge of key distinguishing characteristics of similar illnesses as a point of distinction to narrow down diagnoses c. other testing tool and aids. It seems to me that this is the point that you are not grasping.


6. Spect scans are not part of any historical definition of ME. They are only one of a number of tools used to assist a physican in confirming how accurate an historical medical definition of ME in a clinical setting might be.

Spect / XEON SPECT scans are not a part of any historical definition of ME simply because ME was identified and defined a long time before the introduction of Spect scans. In point of fact a diagnosis of ME was successfully arrived at by physicans well before their introduction. Unfortunately, people forget this and demand a speedy, infallible, 100% specific, exclusive test for an illness. Medicine has never operated this way.


7. Spects are a nuclear medicine 3D imaging device. It is not employed exclusively to detect pathology (in the form of brain lesions/hypoperfusion/vasculitis) in the brain, but are also used to detect tumours, infections, thyroid and other problems with other internal body organs.



8. As with other diagnostic aids in medicine, Spects are not specific as a sole diagnostic tool, for any one illness. The idea that there should be a specific test to diagnose ME is just a nonsense when this is not the case in other areas of medicine. A diagnosis does not take place on aids alone. To suggest that this is why ME is problematic, is misleading



9. Spects are machines and like all medical machinery, the quality of the image is dependent on the operation of the machine, the knowledge of the radiologist in interpreting the scan, the age of the machine and how regularly it is calibrated. Patient movement during the scan, can lead to poor imaging as well.



10. Despite suggestions to the contrary, exercise is not necessary to show pathology in ME. Abnormalities are detectable at rest. Abnormalities give rise to blood flow. After exercise lack of blood flow is more evident, but is not necessary to detect pathology as has been suggested. Clearly shown by SPECTs on patients with ME by MENA and set out in The Clinical and Scientific Basis of Myalgic Encephalomyelitis and CFS Hyde et al



11. Spects also use a radioactive isotope tracer ingested prior to the scan that makes its way into the blood stream -to show blood flow or lack thereof in the brain.



12. Spects are capable of being used in ways to distinguish one vascular disease state from another ie: dementia and Alzheimers disease from others, for instance.



13. The studies you quote were studies using co horts that were selected on the basis of CFS definition(s).

As to why SPECT and MRI also appeared to differ in their sensitivity to changes in symptoms in patients with CFS, it is very hard to say. It is also hard to say with CFS patients in studies like these, what other illnesses the patients may havehad that remain undetected, because we all know how untenably broad those definitions are and how this results in a number of persons that have a number of illnesses. So it is not surprising to see reference to this:

In the second paper, the location of the abnormalities were generally similar in the CFS and depression groups.14.

The items you post are interesting on SPECTs generally and as they relate to CFS patients, but not for the purposes of ME.


14. In so far as pathology appearing and disappearing in CFS I cannot explain that other than to refer back to the point I made at 13.

A study on ME patients to determine whether this takes place, would indeed be interesting because historical medical literature reports that ME patients from epidemics never recovered. It also makes sense when you understand that ME is associated with enteroviral infection. Interestingly, there are parallels between the influences on eneteroviral infections found in ME and XMRV. For example, enteroviruses are difficult to isolate in serology after initial infectious onset and move quickly to other tissue and organs where they remain (ie hidden reservoirs). They are fed with the release of hormones produced via, physical, emotion and intellectual activity. They also have an adverse impact on the immune system. The degree to which repair takes place in the brain would be directly related to the immune systems ability to clean up virus in the brain (and elsewhere). According to enteroviral researchers and physicians like Dr John Chia, because they disperse to the tissues etc, they must be specifically treated if patients are to recover. Therefore, on the basis of historical reports of large numbers of people who contracted ME in the context of epidemics that did not recover; general medical evidence associated with enteroviruses and the work of those in this area, I think it is safe to deduce that specific brain abnormalities in patients with ME, would be detectable by one or more of the tools referred to at some stage during their illness ie flare prior to being treated on antivirals.


15. Hyde has stated that he will not generally make a diagnosis in the absence of a positive SPECT scan. I have read that he has repeated the scan if and when necessary which all good physicians will do where all other evidence (ie test results, symptoms generally as well as those fitting key criteria) may indicates otherwise. He also recommends other scans and whilst PET scans generally can provide better imaging (not specifically with respect to ME), they are less accessible/readily available and more expensive. He has discussed the pro's and cons of the various tests employed in various circumstances. The fact that he has seen more of these tests (SPECT PET MRI QEEG etc) applicable to ME patients than probably any other physican, suggests he has good reasons to recommend SPECT. As for criticisms that this work remains unpublished, as stated elsewhere, I am sure it is not for want of trying - but with 25 years of denialism - as well as its unfortunate association with CFS - it is unlikely to be a popular subject choice with medical journals. Even Judy Mikovitz complains about the problems she has getting her work published and one would think with XMRV being a hot discovery in such numbers in CFS patients the opposite would be true.


16. 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.


Context is always important.


ISO

 

[insearchof]

Hi Bob

The point that I was trying to make, was that some people want to push for 'ME' to be immediately and widely recognised and treated by governments, in a practical and political sense. (At the moment 'ME' is not recognised by governments or medical professionals, in a practical or political sense, at least in the UK and USA.)

I don't personally disagree with this aim, but I question how successful it would be to get governments to totally and massively change their approach to 'ME' overnight.

Thank you for clarifying this Bob.

There is nothing wrong with questioning how successful that might or might not be. I dont believe governments will change their approach over night either, unless a litigious challenge is mounted perhaps - which is an option.

My opinion is that we would have a better chance of making changes for the ME patient community, by pushing for incremental changes to the way 'CFS' is diagnosed. I believe that this would be a more likely way to create successful changes for the 'ME' community in the short term, as we move towards more exclusive and selective criteria for ME patients within the CFS-diagnosed communities. I believe that changes in the way CFS or CFS/ME is diagnosed, will help a wider number of CFS/ME researchers, scientists and the medical profession to carry out more effective research and treatment for ME patients in the long run. You clearly don't agree with me because, understandably, you view the mixing up of CFS and ME as a travesty

.

Yes I dont agree with you Bob for reasons already expressed. Tell me Bob, how many people do you know who have been sick for years, who believe they have ME and have been left to rot in the CFS classification, would be willing to sit there for more years in the mere hope that they might reap incidental benefits that are clearly designed for an illness divergent to their own? And especially given that there has been no recognition and or treatment for ME patients under existing CFS definitions in 25 years, and the general political history associated with ME - is to deny it exists? How realistic is your proposal for ME patients really Bob?

But the 'CFS'-diagnosed community has loads of (undiagnosed) ME patients. So what happens to the CFS-diagnosed community will affect the ME patient community.

I agree entirely, which is why I feel as strongly as I do on making the distinction and adhereing to the proper use and employment of the terms ME and CFS. If the distinctions were more clearly maintained and understood ME patients would be diagnosed as such and not proceed to be given a CFS diagnosis and have to undertake GET which is contra indicated in ME patients

I believe that the political changes you want for ME will come from the CFS-diagnosed community (which includes ME patients), rather than from an enormous step change whereby ME will suddenly be fully recognised, politically.

Tried that for 25 years Bob and that is where ME patients have been for 25 years - in a CFS criteria - which is exactly where governments hope they remain. That way, they can spend minimal money investigating their health issues and simply demand they get on with their GET and deny them disability support pensions - as it would appear may be the agenda of the liberal party here in Australia. ME patients in their droves would then end up on the streets or 6 ft under and possibly both.

The more years that pass by, the more remote ME becomes and the more damage that is done. In all good conscience -this cannot befall another generation of persons who have ME, and those that understand the distinction, the medical literature and political history - will not settle for a continuation of what clearly constitutes a human rights abuse.

 

[Ian McLachlan]

Hi Bob

Tried that for 25 years Bob and that is where ME patients have been for 25 years - in CFS criteria - which is exactly where governments hope they remain. That way, they can spend minimal money investigating their health issues and simply demand they get on with their GET and deny them disability support pensions - as it would appear may be the agenda of the liberal party here in Australia. ME patients in their droves would then end up on the streets or 6 ft under and possibly both.

.

The only thing that is remote is the lack of a decent challenge from organisations set up to represent us. Compared to their poor effort criteria doesn't even register.

 

[insearchof]

Hi Ian

I agree, but I think in part it has also been due to:

* their failure to really understand what ME is and or how it is divergent from CFS and or

* fear that by promoting the truth and mounting a challenge on the basis of that -it will not accomodate all those currently with a CFS diagnosis. What will happen to these
people?

So, we save some and sacrafice others. When those who have been sacraficed for years - say no more - that they want the truth upheld and acknowledged - they want their illness recogised and appropriate medical treatment specific to their illness, they are then told that they are being selfish!

Fear and a failure to embrace the whole truth and nothing but the truth- is what is holding this community back in my view.

 

[Ian McLachlan]

Hi Ian

I agree, but I think in part it has also been due to:

* their failure to really understand what ME is and or how it is divergent from CFS and or

* fear that by promoting the truth and mounting a challenge on the basis of that -it will not accomodate all those currently with a CFS diagnosis. What will happen to these
people?

So, we save some and sacrafice others. When those who have been sacraficed for years - say no more - that they want the truth upheld and acknowledged - they want their illness recogised and appropriate medical treatment specific to their illness, they are then told that they are being selfish!

Fear and a failure to embrace the whole truth and nothing but the truth- is what is holding this community back in my view.

I think the failure is the other way round in that people should have accepted the term CFS as being what they had, and then argued that it was in fact what we Brits call ME. Problem is no lead was taken at representative level to sell it to the community in such a way that they could have mounted a decent challenge and counteracted the mess that followed.

I also dont believe fear is the problem (although I agree it is prevalent). Look at what happened when no fear was shown at APPGs, some sufferers where then branded as unreasonable, argumentative, unbalanced even, yet where was the support at representative level backing the genuineness of their complaints? Had there been the wets that were there would have receded into the back ground.

 

[insearchof]

Hi Ian

Look at what happened when no fear was shown at APPGs, some sufferers where then branded as unreasonable, argumentative, unbalanced even, yet where was the support at representative level backing the genuineness of their complaints? Had there been the wets that were there would have receded into the back ground.

Sorry I am not familiar with APPG or the matter your referring to. Perhaps you can elaborate a little? Thanks.

 

[Bob]

I dont believe governments will change their approach over night either, unless a litigious challenge is mounted perhaps - which is an option.

Yes I dont agree with you Bob for reasons already expressed. Tell me Bob, how many people do you know who have been sick for years, who believe they have ME and have been left to rot in the CFS classification, would be willing to sit there for more years in the mere hope that they might reap incidental benefits that are clearly designed for an illness divergent to their own? And especially given that there has been no recognition and or treatment for ME patients under existing CFS definitions in 25 years, and the general political history associated with ME - is to deny it exists? How realistic is your proposal for ME patients really Bob?

I do understand your point of view ISO.
But like you said yourself, you don't envisage governments will change their approach to 'ME', and recognise 'ME', overnight.
Personally, I can't see it happening at all, for many years, which is why I think that improvements for ME patients will come from the CFS-diagnosed community.
But I totally understand why you don't agree with this.

Of course, it is possible to push for political changes for both 'ME' and 'CFS', simultaneously.
Then we'd both be happy!
Maybe that's a good idea! I hadn't thought of that before!

So the only difference between us, as far as I can see, seems to be the way we think we are most likely to get to an ideal situation for ME patients in a faster time period.

 

[Dolphin]

ISO, you asked me why I mentioned that quote:

http://grubstreet.ca/articles/interviews/byronmhyde.htm


GS What are your hopes for the Nightingale Foundation?

BH Id love to raise $1.2 million dollars. The British government has asked me to come to England. It promises 15 million pounds to set up a foundation, such as I have in Canada, to examine the ME patients, in England.

I told them that number one, I didnt trust governments to come across with money or hire a staff and set up a foundation. Ive at least two university students whove offered to house me, but I thought, if I give up my practice here, I cant afford to wait for two years for the money to come or not.

If I had $1.2 million pounds or dollars, I could not only set up the foundation, in the UK until we did get funding. That amount of money would also allow me to come back to Canada and set up at the university here as well to also properly research these people.

[..]

** This is a verbatim transcript of a taped interview, given by Dr. Hyde, on 8 June 2008, and vetted by Dr. Hyde, on 27 June 2008.

The reason I mentioned that quote, ISO, is that I think it is quite a good example of "poetic license". This came up earily when you asked me why BH might say something that is not true and I mentioned he may use poetic license a bit amongst other possibilities. Then the patient who had attended him told me they would say he uses "poetic license" quite a lot. You challenged me, saying this wasn't your experience. I gave this as an example.
Having a pretty good knowledge of the situation in the UK, I do not believe that BH was promised 15 million pounds by the UK government.

Statements like this and other things mean that I'm not willing to take what he says on faith.

We are called to abandon initiatives like the Canadian Criteria (and the revised one) to a large extent based on what Byron Hyde has said. I am not willing to put so much faith in him.

If we are expected to trust his viewpoint so much, I think his findings need to be published in medical journals.

Of course, even if I had more faith in him, as I have mentioned, other bodies may not e.g. health funders like government agencies (NHS, NICE, etc and the equivalent in various countries) along with insurance companies.

As I have said, with so much of medicine, one doesn't get far without peer-reviewed papers to back up what is saying.

The peer review process focuses the mind. You are forced to find evidence for statements one makes. A lot of people probably tone themselves down.

 

[insearchof]

Dolphin

1. Let me make something crystal clear. I asked you why YOU thought he would over state the findings of SPECT. YOU made that grubby remark about him doing things that were not true.

2. With the greatest respect what you posted shows no such thing. You only* believe* that BH was not made the promise of funding. You have shown no proof. So what you referred to prima facie fails to demonstrate he is taking poetic licence. Further, why would the man make a public statement about the matter that could be readily and easily checked by anyone and therefore damage his reputation and standing in the UK and elsewhere? As pointed out elsewhere, this does not show poetic licence as you suggest. What it appears to show without demonstration of clear proof, is a thinly veiled attempt at a character assignation, because having addressed all the issues you raised on 2 threads, and with your obvious lack of knowledge on ME it looks like you are having to resort to personal attacks.

3. As for your other points they have been addresed on the other thread. If Judy Mitkovitz cannot get her work published on one of the most significant findings since HIV/AIDs, how hard do you think it would be for a man like Hyde to do so, on a subject matter that most people deny exists ? As I have said before, I am sure it isn't for want of trying. Oh and by the way, I read on the other thread your remark that you are trying to put pressure on others to make him publish. There is 50 years of published literature on this topic which he has contributed to in peer reviewed journals.. The issue of SPECT publication although interesting is not necessary in so far as adding anything to what ME is and how to diagnose it. As I have stated already, ME was being successfully diagnosed well bedew SPECTS. But if you would like to see his work on SPECTS published, why not lobby him yourself.?

4. Who is and has called for abandoning the CC CFS criteria? Not I. It is the best criteria I can see, for CFS ....but has no relevance to ME.


I really don't know if it's a matter of your conveniently ignoring matters I have already addressed or if you are having trouble understanding .. but it seems a waste of time and energy to reiterate matters ....that have been addressed adequately on two threads now.

It might be time for you to move on to something else.

 

[Dolphin]

16. 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.


Context is always important.


ISO

I have now read four papers and am going to reply in the next few hours. But I just want to reply to this: reading a definition/codification like the Nightingale Definition isn't supposed to be like reading literature or a religious work. Readers don't expect that "context is important". They expect to take what is written down in the definition on face value.

14. In so far as pathology appearing and disappearing in CFS I cannot explain that other than to refer back to the point I made at 13.

A study on ME patients to determine whether this takes place, would indeed be interesting because historical medical literature reports that ME patients from epidemics never recovered. It also makes sense when you understand that ME is associated with enteroviral infection. Interestingly, there are parallels between the influences on eneteroviral infections found in ME and XMRV. For example, enteroviruses are difficult to isolate in serology after initial infectious onset and move quickly to other tissue and organs where they remain (ie hidden reservoirs). They are fed with the release of hormones produced via, physical, emotion and intellectual activity. They also have an adverse impact on the immune system. The degree to which repair takes place in the brain would be directly related to the immune systems ability to clean up virus in the brain (and elsewhere). According to enteroviral researchers and physicians like Dr John Chia, because they disperse to the tissues etc, they must be specifically treated if patients are to recover. Therefore, on the basis of historical reports of large numbers of people who contracted ME in the context of epidemics that did not recover; general medical evidence associated with enteroviruses and the work of those in this area, I think it is safe to deduce that specific brain abnormalities in patients with ME, would be detectable by one or more of the tools referred to at some stage during their illness ie flare prior to being treated on antivirals.

Firstly, I'm not willing to assume M.E. is caused by enteroviral infection. It could be but I'm not willing to make that assumption.

Also, if one is having a SPECT scan, one can not necessarily have it when one is having a flare. One could be on a waiting list and be called at any time. Further research could test the hypothesis by taking other measurements (either questionnaire and/or some sort of biomedical measureements) at the time of the SPECT scan to test this hypothesis.

As for criticisms that this work remains unpublished, as stated elsewhere, I am sure it is not for want of trying - but with 25 years of denialism - as well as its unfortunate association with CFS - it is unlikely to be a popular subject choice with medical journals.

I'm afraid I'm not convinced that is the reason. There are lots and lots of journals of all sorts out there. Getting published in a high impact journal may be difficult but getting published in any journal is a very different question. The journal of CFS in which he published a study on Imunovir (isoprinosine) published all sorts of things including a piece that complained that the BMJ had editorial bias. I have read some of his output and to me he doesn't appear the sort of person used to writing for medical journals, referencing points that are made. The Bulletin of the IACFS/ME I'm sure would be interested in things he has to submit.

 

[insearchof]

Dolphin

1. If I recall, points were being taken out of that document, which when read and examined as a part of the document as a whole, show that the points are flawed.

But I just want to reply to this: reading a definition/codification like the Nightingale Definition isn't supposed to be like reading literature or a religious work. Readers don't expect that "context is important".

Readers might not expect that context is important, but educated readers do.


2. Primary ME has historically been associated with enteroviral infection, as documented in the literature.Causation has been questioned- though there is evidence to make a case for such. I agree that you should not be willing to assume such, you should do the reading yourself.


3. The literature suggests that lesions are discernable for some time. Some reference is made to lesions being visible within the first 12 months of illness onset, but I know of patients in which they were detected long thereafter and who have vasculitis/hypoperfusion going on many years later. Consequently, I dont think there is any danger of them disappearing over night, but they might come and go over a reasonable period of time - dependant on the state of the immune system. The more virus in the brain, the more damage being done. The less virus in the brain, due to the effects of the immune system, the more opportunity for repair. But I dont believe anyone in the middle of a flare would need to rush off for a SPECT or PET scan on the basis that they might quickly disappear.

UBOs on MRIs come and go over a period, I understand - but this again may be due to a positive response in the individuals immune system and or the nature of the MRI. I have read that an MRI does not always detect pathology - SPECTs on the other hand take a 3D image on the brain and can detect vasculitis deeper in the brain tissues (which is probably another reason Hyde prefers using them)

As for other research - I refer to the lengthy post you quoted from. Spect scans are only one tool and most physicans would use more than one to detect evidence of CNS dysfunction.

4. Re his failure to publish, I do not think it would be earth shattering or change what is already known. Interesting, but would not necessaryily be revolutionary.

Once again you are assuming that he has not submitted material. He has written quite a bit on the general topic of ME and made reference to SPECTS, but I do not know whether it has been published in non main stream journals. Also, if he has made these attempts and it has been rejected by other journals, it might be because they have their own ideas on what they want featured. Moreover, the man has been busy seeing patients all across the world, running an international foundation, giving lectures etc. Judy Mikovitz, has been a busy woman, but has not been solely responsible for or engaged in all these activities.

I have read some of his output and to me he doesn't appear the sort of person used to writing for medical journals, referencing points that are made

Ask anyone outside of the field of research, and they will tell you that they don't really know the first thing about writing an article for publication to a lot of these journals either. I also believe that many research scientists hire professionals who specialise in writing these research papers for submission to the journals, which have very strict submission guidelines.

I think that you and others who have pointed this out, are being unnecessary harsh on the man, for reasons I can only speculate over.



ISO

 

[Dolphin]

4. Re his failure to publish, once again you are assuming that he has not submitted material. Also, if he has and it has been rejected by other journals, it would primarily be because they have their own ideas on what they want featured. Moreover, the man has been busy seeing patients all across the world, running an international foundation, giving lectures etc. Judy Mikovitz, has been a busy woman, but has not been solely responsible or engaged in all these activities.

ISO

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.

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.

We are going to have to agree to disagree that it's the fault of all the medical journals in the world that he can't (with a few exceptions) get published for the last 20 years. I wouldn't accept this from other researchers either.

Spect scans are only one tool and most physicans would use more than one to detect evidence of CNS dysfunction.

On public health systems (e.g. the NHS), one may not have the option of having different types of scans. And it's certainly unlikely to be an option for large numbers of people without studies in peer reviewed journals.

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. And if it designed for insurance cases, where is the definition/codification for other people from BH.