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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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maryb, when I and several others challenged the wisdom of slogans like "CFS = XMRV = living death", and similiar, as in the list I posted earlier, I was ripped into by Gerwyn for allegedly "lecturing him" and he was extremely rude and hostile towards me; I was also called a "troublemaker" by the forum owner, which is one of the reasons I left.
I suggest that you poke around on that forum and witness the level of ad hominem that the mods and admin allow to go unchecked.
Several of those involved in IMEA are members, mods or admins of ME-CFS Forum.
Many of the forums are public and some of these "Directors" of IMEA are not presenting themselves in a professional manner.
They need to put their own house in order first.
Suzy
Patricia from IMEA has told me that IMEA will not be posting on Phoenix Rising. I have posted on the mecfsforums.com thread on IMEA (reply #57) a link to here asking that IMEA look over people's questions and respond on that thread on mecfsforums. The thread is in the public area of the forum so anyone can post there without becoming a member, as I understand it.
http://www.mecfsforums.com/index.php/topic,6029.new.html#new
Patricia from IMEA has told me that IMEA will not be posting on Phoenix Rising. I have posted on the mecfsforums.com thread on IMEA (reply #57) a link to here asking that IMEA look over people's questions and respond on that thread on mecfsforums. The thread is in the public area of the forum so anyone can post there without becoming a member, as I understand it.
http://www.mecfsforums.com/index.php/topic,6029.new.html#new
IMEA-New M.E. Association
Xxxxxxxxxx Last edited by Ana; Yesterday at 10:36 PM.
Thanks, Justin, for your efforts to provide information.
So if the IMEA's official policy is not to post on Phoenix Rising, does that mean that no more posts from Wild Daisy and Ana will be forthcoming here? Is Ana, the user who started this thread, indeed Patricia Carter?
....
If I were to ask questions at mecfsforums.com (can I really do this without registering?), am I assured of being responded to politely? At the moment, because of negative reports I've heard about what goes on at that forum, I am not willing to post on mecfsforums and risk further damage to my health.
fwiw- IMEA said when it launched it isn't soliciting/accepting donations yet; I think until it gets incorporated. They request donations to WPI.
Battling over the name is pointless - there's no clinical basis to use M.E (encephalomyalitis or encephalopathy ?) because there's no research that demands use of that terminology; even if Ramsay et al are invoked to support neurological description there's no reason to conclude that the name M.E competently describes a distinct patient group. M.E has served the patient population in the UK for branding purposes and I can't see AfME, IIME or the MEA changing their names any time soon, but that's an advocacy issue not a scientific one. I come back to the point I made previously:
"there's no clinical basis to use M.E (encephalomyalitis or encephalopathy ?) because there's no research that demands use of that terminology".
No matter how much we may want Goldstein, Hyde and Levine to be accepted as 'authoratative' across Global clinical and research interests, they are not currently accepted as such, and more significantly neither is the body of reference given in The Clinical and Scientific Basis of ME and CFS accepted as an 'authoratative' body of description.
One can marshall all the evidence one wants, but if no one that matters is listening, it will not achieve change. In that light it is reasonable to ask the questin - 'what's the point of the argument ? It is circular and therefore 'pointless
I'm mot sure that I understand this.A simple name change might not make much immediate difference on its own, as it hasn't in the UK, unless other changes are also made.
.But a name change can be an important starting point for our community, and like you say, it can be a useful branding tool, which can help to improve public opinion towards the disease
3. Spects -do not require extensive research or reading to undertake or to understand. A simple explanation on their function and application for diagnostic purposes in ME can be found in Missed Diagnoses Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, Hyde, B 2009. A great little book selling online for a few dollars.
I'm not sure if that is true. I know somebody who attended Byron Hyde as a patient and he depends on radiologists to read them. This person (who isn't not me, in case anyone wonders) never in fact got definitive results on their SPECT scan. I can't say anything more about this person and their medical history without their permission. But what I heard made me more sceptical that the results of SPECT scans have 100% sensitive and specificity for an ME diagnosis which is the impression sometimes given.
I think it would be better to continue discussion of SPECT scans on the other thread: http://forums.phoenixrising.me/showt...-s-differences . What I said was not accurately mentioned on this thread but I don't want to derail the discussion here. As I said on that thread, I don't know everything about SPECT scans and am happy to be educated on how they can be used in the diagnostic process with specific information e.g. threshold information.
I will be interested to hear the details. Another thing that this person found was how much activity one did before the test could affect what the result was but this wasn't well controlled. If my memory serves me correctly, the person wasn't even told about this in advance.Hi Dolphin
Quite happy to go into detail on the other thread, but wanted to address this point.
Unfortunately, I did not do a good job in expressing myself there. What I meant was, that it is not too difficult to find easy to understand information on the general application of spects for the purposes of ME diagnosis. These are medical scans and like MRI's, EEGs etc need to be professionally read by a relevant and suitably qualified medical technican.
In fact I believe Byron Hyde has made the point, that part of this exercise involves finding someone who is knowledgable in reading them/knows what to look for.
It is like UBOs on MRI's that sometimes show up in ME and CFS patients. I have read and been told by someone who has seen many, that most radiologists are not trained to identify them and or understand their significance (perhaps outside of AIDs dementia/dementia in the elderly).
There may be a number of reasons as to why your friend did not get a definitive reading on their spect - which I am happy to address on the other thread, at some stage.
ISO
Hi Bob,
I wanted to address the comments you made earlier, but have not had the chance.
I'm mot sure that I understand this.
Not quite a name change, but an association in the UK ..... that ME is really CFS........ has made a huge difference. It has essentially denied that persons who were once regarded as suffering from non paralytic polio or atypical poliomyelitis with noted and demonstratable changes to their central nervous system - (which in turn can effect an individuals ability to maintain regular homeostatsis necessary to stay alive) - was CFS: a fatiguing illness with no known cause, which could be ''fixed' with graded exercise (which I might add, is contra indicated for ME patients, in historic ME literature).
So I dont think you can dismiss the significance of the impact any changes - to name or otherwise, is going to have here.
Certainly, the term CFS was always intended to be a temporary one as I understand it.
I think this idea is over due and needs exploring in relation to CFS, but unfortunately you will not be able to successfully claim the term ME, as it already belongs to a distinct illness - identified and supported by medical fact. It is not available to be used and or applied towards CCC CFS or any other definition of CFS, or to any other illness, because it has already been assigned elsewhere, as acknowledged by the WHO in 1969.
An attempt to do otherwise, will never sit well with the ME community that is intent on having the medical historical literature acknowledged once again, and preserved.
THE OTHER THREAD
If in undertaking the exercise you are engage in, on the other thread, is to achieve some consensus, then in my view, before you can get there - you need to have all the relevant facts/knowledge at your disposal and an understanding and clarity regarding the same.
So if I may make a suggestion - it might be prudent to collate and acknowledge the relevant medical facts on ME, as supported by the medical literature and promoted by world ME authorties, -that is relevant to, and distinguishes ME from, CFS.
If you had a page that did that - I think consensus is more likely not only to be achieved, but to stick. Without that, it seems to me, that you might expend a lot of energy -with an interesting and lively discusion, but not a definitive outcome/and or one that is supported by the whole community (ME advocates).
You might also like to give consideration to extending an invitation to persons from ME bodies to participate in the exercise (if interested). I dont know whether they would be available but I am sure they would appreciate the invitation and consider it with interest.
I make this suggestion because if this was a consensus building exercise off line, and it was approached professionally, these groups (ie HFME, etc) would (in my view) be identified as a stake holder in this process and thereforebe invited in the hope of achieving a successful outcome.
ISO.
So the problem is with the operator and not the Spect, I would suggest. For accurate results in relation to all testing, there are generally some requirements to maximise results. But this comment suggests a procedural failure and not one in the specificity and accuracy of the tool itself for diagnosing ME.Another thing that this person found was how much activity one did before the test could affect what the result was but this wasn't well controlled. If my memory serves me correctly, the person wasn't even told about this in advance.
My general approach to things is scepticism; until I see more evidence, I'm inclined to think that Byron Hyde has overstated how good SPECT scans are at differentiating M.E. from everyone else. And this in turn has led to others overstating how good SPECT scans are at differentiating M.E. from everyone else.
I'm not sure that UBOs on MRIs give anything close to 100% sensitivity or specificity.
This person was having the SPECT under Byron Hyde in Canada. Where is the place to get it done with the right procedure then? If a test can be influenced by mental or physical activity, there should be a procedure to ensure they don't do either too much or too little - have you heard what it is?So the problem is with the operator and not the Spect, I would suggest. For accurate results in relation to all testing, there are generally some requirements to maximise results. But this comment suggests a procedural failure and not one in the specificity and accuracy of the tool itself for diagnosing ME.Dolphin said:Another thing that this person found was how much activity one did before the test could affect what the result was but this wasn't well controlled. If my memory serves me correctly, the person wasn't even told about this in advance.
We're getting into the realm of speculation about why somebody might hype something - I can't say anything with confidence. One thing that might have influenced him is court cases and trying to make a strong case for somebody that a finding is definite? Attracting customers might be another possibility: you pay a large fee to have oversee your care. Maybe he said it once and doesn't want to go back on? He's a part-time write and may indulge in a sort of poetic license? Who knows why somebody might hype something.Why would he do that?Dolphin said:My general approach to things is scepticism; until I see more evidence, I'm inclined to think that Byron Hyde has overstated how good SPECT scans are at differentiating M.E. from everyone else. And this in turn has led to others overstating how good SPECT scans are at differentiating M.E. from everyone else.
Who do you have in mind?If that is so, then it means that one of the worlds leading authorities/physicians on CFS does the same thing then.
This is exactly the sort of thing that I wanted to discuss on the other thread.
In your mind, you might be very certain what ME is. You might define it as a speicific historical illness, as defined by Ramsay, and as acknowledged by the WHO (I'm not sure how you define it.) But it seems to me that almost everyone on this forum has their own individual interpretation of what the terms 'CFS' and 'ME' represent, and I wanted to gain a fuller understanding of this.
You say that the term 'ME' is not available to be applied to CCC, 'fact'. But I don't think that everyone agrees with that. Things have evolved over the years, and the term 'ME' now seems to be used flexibly, at least in a practical and political sense.
In my experience, most people with ME haven't even heard of Ramsay or the historical outbreaks, if that is what you are referring to when you say that the term 'ME' has a medical evidence base, and is a specific disease.
I'm not saying that you are wrong about your interpretation of what ME is, but I'm just pointing out that there are so many interpretations that everyone seems to have a different opinion about the subject.
You say that the name 'ME' is not available to be used for other uses, 'fact', but I don't entirely agree with that. I think it will be available if the authorities decide it is, in practical or political terms. And the authorities' political decisions have a direct impact on our disease, whatever the historical medical evidence.
You say that the name 'ME' is not available to be used for other uses, 'fact', but I don't entirely agree with that. I think it will be available if the authorities decide it is, in practical or political terms. And the authorities' political decisions have a direct impact on our disease, whatever the historical medical evidence.
The term 'ME' is usually used loosely now, and I think there needs to be a conversation in our community about what definitions we find acceptable to be used in a practical sense, such as for research. But also which definitions we find acceptable to be used in a clinical sense. Even if medical fact defines 'ME' as a very specific disease, politics can change the meaning, and I think that our community needs to have a conversation about this.