• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Cross Party Group on ME

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Yes, it is quite strange how a single convener can manage to alienate nearly the entire membership of a CPG.
I wonder why the convener thinks that 'CFS' doesn't relate to G93.3.
There was clearly a break-down in communication. It's a shame it wasn't sorted out before the convenor allegedly insisted on having an inappropriate vote.


(This post is purposely one-sided - I wanted to give some balance to the quoted post.)
You're just trying to wind me up but I'm not playing.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Okay, see if I am reading this right. You get meds for your symptoms such as pain meds,antidepressants (antidepressants are very effective for pain), meds. to help you sleep, etc. Beyond that, AFAIK, there really isn't much more that can be done for our condition. While this is hard to accept it's the reality of the state of science at this time.

It baffles me that patients are not sent to neurologist, virologist, etc. who would decide if things like antivirals are really needed? GPs should not be handing out antivirals and specialist need to be judicious and make sure there is indication that a patient does indeed have a virus.

I was just using POTS as an example. I do not have this and forgot it 's sometimes not recognized but maybe that is saying something. Patients may be looking for something like POTS which may not truely exist or at least not exist in their case. I need to find information about this.

The same may be true of conditions like Chronic Lyme and Morgellons, hypothyroidism, just to mention a few which are most likely not as prevalent as some would think.

I am not wondering about the veracity of such staements as the doctor's just stare or are rude and don't have any incentive to treat people but I wonder if these type of statements may be somewhat overgeneralized from patients who are, and rightly so, in need of relief. It's the same in the US. Doctor's come in all size and shapes when it comes to treating as well as relating to their patients and it's frustrating if there aren't straightforward answers.

We are also locked as far as physician choice depending on your insurance carrier.

Please do not think I am downplaying the harshness of the UK system. While we do have similar prioblems they absolutely do not appear to be as severe or as dogmatic as in the UK. As I said earlier, if all I was offered was GET and CBT I would be outraged. But if you bypassed the clinics, it appears the same options are offered? I may be drawing the wrong conclusions and overgeneralizing myself, so would value any appropriate input. Rememberthis is still a learning process for me.

I would highly recommend the following article which Firestorm pointed out in a previous post.

While it's not about me/cfs, the parallels and similarities to our situation are quite startling.

http://www.sciencebasedmedicine.org/index.php/a-pandas-story/#more-23161



Now that is a long and arduous process.

Barb C.:>)
Hi Barb,
While I accept that some patients in the UK do have very bad experiences I'm not sure it's quite the norm that Bob indicates it is. Like you I recognize the limits placed on clinicians for what is a poorly understood illness with no accepted treatments.

I've had one GP, not my own, tell me there's nothing they can do because they can't even prove I'm ill but beyond that one ill informed individual my experience has been very positive. I also get shrugs from my GP but I can see it's because he desperately wants to help me but feels powerless to do so beyond treating my symptoms as described.

In the first fling of this illness I saw three specialists in three different fields and can't even in reflection criticize any of them so either I'm extremely lucky or there are many many good doctors out there, at least in rural Scotland.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I read this as a blatant attempt to exclude everything but ME from consideration, I can find no other explanation for including the term ME along with ICD10 93.3, surely that on its own is enough to explain the objection to that vote option, as you note and I've previously posted, ICD10 is NOT an ME definition, it's an ME-CFS / PVS definition. You imply that this is what option one 'actually' meant but there's nothing written to evidence that. In suggesting what you suggest only general fatiguing syndromes were 'intended' to be excluded but the WHO list under ICD10 F48.0, so there's not confusion between the two on their part. For a vote of such gravity I at least am not prepared to consider that it's simply been badly worded, when the vote option specifically states ICD10 - ME, then I would take this to mean, not ICD10 - CFS and not ICD10 - PVS but ICD10 - ME, exclusively.

Yes, I admit I have made a few assumptions here, so I could be wrong about the motivations.
But, equally, you don't know what the motivations were.
We are all speculating.

I assumed that the desire to drop the term 'CFS' was just to move the remit away from the psychological model.
There was no discussion re diagnostic criteria, so it's impossible to know what the exact intentions of the group were.

The choice that the convener put forward in the vote was between ICD10 G93.3, and all fatiguing illnesses.
It wasn't a sensible vote.

I don't know what you mean when you refer to ICD10 F48.8.
The convenor wanted that included in the remit for the CPG.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
The NHS isn't perfect but across three decades not just of my illhealth but a whole range of my family's health issues, we've had brillant GPs who've been immensely supportive. I don't recognise most of the negative comments made on this forum about UK doctors, and while I'm aware of individual GPs who have failed miserably in their duty of care, and even though my view is that the whole structure of primary care in the NHS has been flawed since 1945 !, UK primary care provides the base for delivery of the most efficient public health system in the world. At some point, if the needs of a particular patient group are being consistently presented as being uniquely neglected while others are being delivered effective care, one has to start asking questions about the perspective of that one patient group.

IVI
Perfectly put.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I see.

So such questions will inevitably be along the lines of:

'Are you imagining 'bad' treatment when it's actually brilliant and supportive?'
'Are you a negative person for whom nothing is good enough?'

What other questions should be asked about the 'perspective' of that 'one patient group'?

Or maybe we should be asking about the 'perspective' of the 'other patient group':

'What is your illness?'
'Are you a pollyanna?'
' Do you believe that because some illnesses are treated well in the NHS, ALL illnesses are therefore treated well in the NHS?'
The NHS cannot be held accountable for the lack of understanding around our illness, that short coming is primarily political, partially parochial, partially financial but mostly just due to the complex nature of this condition.

Ultimately, and for patient protection, treatment will always be limited by guidelines, clinicians in the UK as elsewhere have little scope out with those guidelines.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Well then one is looking in the wrong place. Try looking in the bathroom you'll see on the toilet paper holder - the NICE guidelines. Listen in the doctor's office and witness the general "turn a blind eye", "not my problem" culture of using unscientific diagnostic tools based on phantasmagorial psychosomatic disease models. Take a good look out the window, see that little blob falling down? It's the scientific method and it's just been thrown out.

Ask your self how many other diseases are both this crippling and the average patient has to find a doctor who believes in their illness? How many cancer patients are overjoyed that they finally found a doctor who believes in cancer? Don't you think they would be complaining if they were in our shoes?

I understand the frustration, but bad doctors aside, this isn't their fault they don't direct research they simply work within 'current official' understanding and treatment options. Cancer is a well understood illness with clear pathology, ME/CFS is not, that's why we advocate for more research.
 
Messages
13,774
At some point, if the needs of a particular patient group are being consistently presented as being uniquely neglected while others are being delivered effective care, one has to start asking questions about the perspective of that one patient group.

To be fair, it's possible that this was a political observation rather than a personal observation.
But it was still an insensitive use of words, at the very least.

If it was a political observation, then I would question if ME patients have ever asserted that they are treated worse than any other patient group.

I thought it was a rather unfair straw-man, and also an attitude which rather ignores that fact that certain groups of patients can be very badly treated by a medical system which treats other well. Some people do start from the assumption that those with power and authority will treat others fairly, in which case, many of the complaints from CFS patients will seem unbelievable, and be taken as evidence that it is the patients themselves who are the problem. This sort of attitude is often used to dismiss legitimate complaints from those in positions of weakness. I don't think that means that we should pretend that there are not unusual problems related to the way in which CFS patients are treated by the CFS, or that there are not many people who have important and legitimate grievances about the way in which they have been treated. It can always be tempting to pragmatically beneficial to bend one's arguments to the desires and interests of those already with power - but I think that such pragmatism is always harmful in the long-run.

I've had one GP, not my own, tell me there's nothing they can do because they can't even prove I'm ill but beyond that one ill informed individual my experience has been very positive.

That sounds like my current GP, and I'm clinging on to him because he's the best I've had since getting ill a decade ago. All but one of the others have reassured me that so long as I keep increasing the amount I do I'll recover, and that it's important that I don't let my symptoms stop me doing things. I have heard that things are worse in the south-east, and were particularly bad when I got ill and people trusted the Chalder/Wessely approach more. The lack of provisions in Scotland could have some advantages too, in that there's less faith in those claiming to be able to be experts in CFS and be able treat it.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I know someone who was diagnosed with CFS, and it later turned out that they had cancer.
This example of misdiagnosis, is another reason why CFS patients need extensive tests.
I think that clinical centres of excellence should be involved in that sort of diagnostic testing and exploration.
Yes, I agree, and those centers would therefore have to consider all fatiguing illnesses with and unexplained diagnosis, so that they could decide it it was Cancer, Psychiatric, Addisons or still just unexplained - ME/CFS, ME, PVS, take your pick.
My point is you can't say I want a center just for ME and no other condition and also say you want that center to safeguard against miss-diagnosis.
If this had been your only post we'd be in complete agreement.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I don't know what you mean when you refer to ICD10 F48.8.
"Chronic fatigue syndrome is indexed in the following manner in ICD-10:
Syndrome
- fatigue F48.0
- - - chronic G93.3
- - - postviral G93.3"

If my post didn't it should have said, F48.0 not F48.8.

The second vote option said 'all fatiguing illnesses', presumably it should have said, all unexplained fatiguing illnesses but perhaps that was implied as if they were explained then they were already out with our understanding of ME / ME-CFS.

In any case, where's the harm if some psyc cases were referred by GP's, my GP has regularly referred me to higher authority to confirm his thinking or because he was unclear, that's the NHS service model. As long as the center then CORRECTLY sent such misdiagnosed patients on to a psychiatrist then surely that's efficient and effective management, and the best use of the proposed asset. It's also a much more palletable option for an MP who is GENUINELY trying to envisage brining such services into being.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
That sounds like my current GP, and I'm clinging on to him because he's the best I've had since getting ill a decade ago. All but one of the others have reassured me that so long as I keep increasing the amount I do I'll recover, and that it's important that I don't let my symptoms stop me doing things. I have heard that things are worse in the south-east, and were particularly bad when I got ill and people trusted the Chalder/Wessely approach more. The lack of provisions in Scotland could have some advantages too, in that there's less faith in those claiming to be able to be experts in CFS and be able treat it.
I've gravitated to one GP, simply because I can see he's doing his best for me, he's even gone as far as to read up and cross reference studies I've mentioned over the years. That said his initial advice was that the best prognosis was for those who fought the illness the hardest, turns out that was the worst advice I've ever been given. Point I'm making is it was given in good faith, because that's what he was being told by the system he trusts.
Until my last visit just a few weeks back I never actually knew whether he believed the illness to be physical or psychological, and that was fine because as I say, I knew he was doing his best in any case.
On my last visit I happened to mention something SW had stated, for a while my GP was confused as to who SW was and on realizing to whom I referred, he shook his head and stated, 'when the answer comes it won't be psychiatric'.
There are good GP's who know what's in front of them.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Yes, I agree, and those centers would therefore have to consider all fatiguing illnesses with and unexplained diagnosis, so that they could decide it it was Cancer, Psychiatric, Addisons or still just unexplained - ME/CFS, ME, PVS, take your pick.
My point is you can't say I want a center just for ME and no other condition and also say you want that center to safeguard against miss-diagnosis.

Agreed. I wonder if these issues were discussed at the CPG.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
"Chronic fatigue syndrome is indexed in the following manner in ICD-10:
Syndrome
- fatigue F48.0
- - - chronic G93.3
- - - postviral G93.3"

I knew what you meant by "F48.0", thank you, but I don't understand the context in which you were using it.
CFS/ME/PVFS have nothing to do with F48.0.
F48.0 only relates to Neurasthenia and 'Fatigue syndrome'. ('Fatigue Syndrome' is not 'CFS'.)
F48.0 indicates a 'neurotic disorder' (purely a psychological illness), and not a 'neurological disorder'.
CFS/ME/PVFS are categorised under G93.3.
 
Messages
13,774
I've gravitated to one GP, simply because I can see he's doing his best for me, he's even gone as far as to read up and cross reference studies I've mentioned over the years. That said his initial advice was that the best prognosis was for those who fought the illness the hardest, turns out that was the worst advice I've ever been given. Point I'm making is it was given in good faith, because that's what he was being told by the system he trusts.
Until my last visit just a few weeks back I never actually knew whether he believed the illness to be physical or psychological, and that was fine because as I say, I knew he was doing his best in any case.
On my last visit I happened to mention something SW had stated, for a while my GP was confused as to who SW was and on realizing to whom I referred, he shook his head and stated, 'when the answer comes it won't be psychiatric'.
There are good GP's who know what's in front of them.

Having read more of what was being told to GPs when I got ill, I'm more understanding of their approach to me and my illness (to some extent, I understand them being frustrated and irritated by the fact that I was not improving). On the other hand, I do think that GPs should do more to look critically at the evidence, particularly in controversial areas like CFS/ME/PVFS/etc. We cannot have a system which tolerates both researchers spinning their results, and GPs which simply trust the claims of those researchers.

his initial advice was that the best prognosis was for those who fought the illness the hardest

I do think that more needs to be done to decide who is responsible for these sorts of claims being made to patients.

I think it is a relatively small group of researchers who have badly let patients down, but there should at least be some serious attempt to find out what has led to these problems, how they can be stopped, and how they can be avoided in the future.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Sorry Bob, but unless you mean something quite different to what you post then I'm at a loss as to when in any of this you've argued for community, except when writing about community. From the outset you appear to have argued that there is a REAL difference between ME and CFS, that's at least two communities, you've also argued for the right of one to lobby separately to the other. Maybe you're missing it, but many who would qualify as ME under the notional definition of ME but who are saddled by the establishment as CFS or PVS don't like being excluded, that isn't encouraging of community but divisive.

Holmsey, when I first started posting on this thread, it was in response to some strongly worded posts (including some rude and insulting posts - now mainly deleted) about members of our community/communities.
My intention was to put forward a different perspective about the subject, in the hope that the people posting strongly worded comments could see that the issues were complex and multi-faceted.

So, my posts could very well have been one-sided, because I was trying to explain a particular advocacy position.
But that doesn't mean that I hold the same views as the people that I have been defending, other than where I have specifically expressed my own opinions.

Equally, I don't like seeing 'ME' advocates saying things that deeply offend people who prefer the use of the term 'CFS'.
I have often rigorously challenged 'ME' advocates on this forum in the past, by explaining how their opinions impact on other people.

I know from experience that any anger and frustration, surrounding this subject, is mainly based on misunderstandings; different personal perspectives; and a breakdown in communication.
Once people start to understand each others' perspectives, then I invariably see the two sides coming together and supporting each other, if not entirely agreeing with each other.
It doesn't always happen, of course. Sometimes the differences are irreconcilable.

(Unfortunately, this breakdown in communication and understanding also appears to be being played out at the CPG. It's unhelpful and unproductive.)

All the time, in this thread, I've been coming from a position of attempting to challenge the sometimes divisive opinions that have been expressed here, which I've found offensive at times.
It's ironic that you accuse me of being divisive, when I have been attempting to show people that some of the opinions that have been expressed in this thread are divisive and counter-productive.
On this thread, 'ME' advocates have been criticised, unfairly in my opinion, and I've attempted to challenge those who make those criticisms, by trying to explain the complexities of the issues.
That doesn't mean that I always agree with 'ME' advocates.
(I have explained my own opinions quite clearly, I think, in at least one post.)

I've also wanted to point out that the information available to us it incomplete, and that we can't make any meaningful judgements until we know exactly what has happened.

You seem to have misunderstood where I'm coming from.
Maybe that's entirely my fault. Maybe I haven't expressed myself well.

My position isn't that "ME is different to CFS", and I don't think I've said that in such simple terms.

The discussion in this thread has gone around in circles, and I've clearly failed to do what I set out to do.
But I do hope that some members at least have come to understand that the subject is multi-faceted.

Many members of the community support the CCC and ICC, for various reasons.
I think we should all try to understand these reasons before we dismiss the wishes of people who support the CCC and ICC.
I think the main reason for the desire for these criteria to be used is based on first-hand personal experience.
And there are also political reasons, and scientific reasons.


My personal position is that I support the use of the CCC and ICC for research purposes, along with any other selective biomedical criteria that researchers wish to use.

The CCC/ICC are based on years of careful observation by many clinicians.
They have not just been plucked randomly out of the air.
If there are no better ways to define an illness, then careful observation is the only way to do it, and it is the traditional way to do it. (It's what the CDC is doing right now with its new definition.)
So for this reason, and because of my personal experiences, and the experiences of other CFS/ME patients, I believe that the ICC & CCC have value.
Mistakes can be made, but these are corrected as time goes on and as more knowledge is acquired.

Wanting the ICC and CCC to be used for research has nothing to do with dividing a community.
It's about wanting the best science. Using the most selective criteria available is good science. It moves the science forwards for everybody, not just the researched group.

I'm not saying that patients should be divided up.
I'm just saying that the more selective biomedical criteria should be used in research.
Any selective biomedical criteria. It doesn't have to be 'ME' criteria.

I agree that all patients should be included in a clinical sense, but that doesn't mean that patients can't be sub-setted in a clinical setting.
Sub-setting for research is an obvious approach.
I think that sub-setting in the clinical sense could have advantages now, as well.
Patients could be diagnosed using the various criteria, in clinics, in order to further the research, and further our insights into CFS/ME.

For example, those meeting the ICC criteria might all respond to similar treatments in a similar way.
Those falling outside the ICC, but within Fukuda, might be the best group to be investigated for other causes of their fatigue.
Those falling outside Fukuda might respond well to psychological interventions. Or they might not.
We don't know until we try it out.
So why aren't patients being diagnosed using various criteria now, and strict records kept, and records kept on the paths of their illnesses?
This could give us a lot of invaluable information along the way.

Just saying that we are where we are, and no changes need to be made will keep us exactly where we have been for 30 years.
We don't have to all agree with each other, but let's at least try to understand each others' opinions, experiences, and perspectives, and why we have them.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Sorry Bob, but unless you mean something quite different to what you post then I'm at a loss as to when in any of this you've argued for community, except when writing about community. From the outset you appear to have argued that there is a REAL difference between ME and CFS, that's at least two communities [...]. Maybe you're missing it, but many who would qualify as ME under the notional definition of ME but who are saddled by the establishment as CFS or PVS don't like being excluded, that isn't encouraging of community but divisive.

I've just read back over my first few posts in this thread, and as far as I can see, you have completely misrepresented me, in the above quote.

I have not advocated for clinical separation of patients, or for exclusion of CFS/PVS patients, or that 'ME' and 'CFS' are different, or that exclusive 'ME' clinics should be set up in Scotland, or that the 'CPG on ME' should exclude CFS patients in its remit.

I'm pretty certain that you won't be able to find a quote where I have advocated for any of the above.


I might have advocated for using the term 'ME' instead of 'CFS' (a simple name change), but that would be an inclusive process, as far as I am concerned. And I think I've only discussed the possibility, rather than 'advocate' for it.

I agree that I have defended the right of people to lobby for their own self-interests, but I don't think that's controversial. It doesn't mean I have to agree with what they are lobbying for. After all, you would lobby for your own self interests, wouldn't you? We all lobby for our self-interests. 'ME' advocates might say that you were being divisive if you were to lobby for 'CFS' clinics, because they might say that excludes them from receiving proper treatment, and that it excludes their needs.

My approach to this thread has been to try to get each other to understand each other's points of view. I've been attempting to bridge divides, not to divide further. I'm sorry that you've completely misunderstood my posts.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I know what you meant by "F48.0", but I don't understand what context you were using it.
CFS has nothing to do with F48.0.
F48.0 only relates to Neurasthenia and 'Fatigue syndrome'. Fatigue Syndrome is not CFS.
F48.0 has nothing to do with CFS/ME/PVFS, but indicates a 'neurotic disorder'.
CFS/ME/PVFS are categorised under G93.3.

You appeared to suggest in an earlier mail that your belief was that voting option 1 only intended to exclude unexplained fatigue, IMO, the WHO have covered this option via F48.0, thus allowing voting option 1 to be stated simply as ICD10 - G93.3 without mention of ME, the deliberate inclusion of ME suggests a quite different agenda.
Hope this clarifies.
 

Quilp

Senior Member
Messages
252
Hi Barb,
While I accept that some patients in the UK do have very bad experiences I'm not sure it's quite the norm that Bob indicates it is. Like you I recognize the limits placed on clinicians for what is a poorly understood illness with no accepted treatments.

I've had one GP, not my own, tell me there's nothing they can do because they can't even prove I'm ill but beyond that one ill informed individual my experience has been very positive. I also get shrugs from my GP but I can see it's because he desperately wants to help me but feels powerless to do so beyond treating my symptoms as described.

In the first fling of this illness I saw three specialists in three different fields and can't even in reflection criticize any of them so either I'm extremely lucky or there are many many good doctors out there, at least in rural Scotland.

Hello Holmsey ( my bolding )

What would you define as the norm ?

My own experience of talking to local support groups is that GP's have badly let us down. Perhaps it's the effusion of nonchalance, the arrogance, the air of indifference.......perhaps it's just me. Yes there are good G.P's; kind, sympathetic, engaging, and of course as you have rightly pointed out, constrained by the fact that there are no universally accepted treatments, but that should be no substitute for ignorance.

There are an estimated 250,000 sufferers of an illness that is a ''serious and potentially life threatening disease'' and yet there are many ( I believe a significant number ) GP's who know less than nothing ( that is they think it is something it is not ) about an illness that has been alluded to for decades. That is difficult to countenance.
If just one G.P. in my practice was able to contribute to this thread in any meaningful way, I would be, well..........

It would seem that rural Scotland is far more enlightened than urban Yorkshire.

Kind regards, Mark
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
You appeared to suggest in an earlier mail that your belief was that voting option 1 only intended to exclude unexplained fatigue, IMO, the WHO have covered this option via F48.0, thus allowing voting option 1 to be stated simply as ICD10 - G93.3 without mention of ME, the deliberate inclusion of ME suggests a quite different agenda.
Hope this clarifies.

OK, but you don't know what the motivation was, for including the name, any more than I do.
As I've suggested before, it could be just to move away from the dreaded 'fatigue' word.
It might be nothing to do with diagnostic criteria.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
My personal position is that I support the use of the CCC and ICC for research purposes, along with any other selective biomedical criteria that researchers wish to use.
Ok, I have to admit having read this post I've probably picked you up wrong, we're clearly far more in accord than I've previously appreciated.

I don't know when CCC came into being in relation to those early diagnoses of ME, I suspect it wasn't what lead to the ME diagnosis and certainly the ICC is still to be acknowledged it's so recent.

Coming back to this thread my position is simply that what was once given a cursive nod as ME is now given a similar cursive nod as ME/CFS or PVS, general fatigue which may be related to depressive or other psychological conditions is CLEARLY a different animal. Clinicians who suggest PVS, in my opinion, are acknowledging exactly the same illness but accounting for, as in my case, a clear and severe infection as a pre-cursor to systemic collapse of multiple bodily systems, as a clinician you'd have to be a numpty to ignore them.

I believe that if you took those doctors who formerly diagnosed ME and presented them with a cohort of PVS or CFS patients today then they would insist that it was ME. I doubt that was lost on Mary Fee or the other MSP's who would no doubt collaborate out with the CPG. If the same understanding is lost to either group mentioned in this thread then IMO the MSP's have a better grasp on the reality of our current understanding of this illness than either of those two groups.

Dispassionate rationality is the hallmark of good politics, the proposition put forward even if accepted by those MSP's involved effectively derailed any chance of the group achieving anything, no government is going to endorse exclusivity where public funds are involved, at least not if they want re-elected. I doubt the MSP's misunderstood the objective in forcing the vote, rather they just plainly saw the flawed logic in the proposition and realized how unsaleable the overall objectives of the group became if burdened with that exclusion clause.

We took a group of MSP's who clearly wanted to help us, who clearly wanted to advance our position and then made it political suicide for them to do so.

We are the only losers, go check out Mary Fee's website and see how many other patient groups she supports, be clear this is only a set back for us, not for any of those politicians who will look back and think, wow that was a lucky escape!