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Cross Party Group on ME

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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

medicine is a complex business. It is especially difficult to identify new diseases and clinical entities. The creation of a new diagnosis must be done very carefully, with thoughtful scientific studies used in an open-minded way to explore all the complexities involved. Only when all the ducks are in a row can we confidently conclude that a new diagnosis is, in fact, a distinct entity, and not just a variant or misidentification of existing known diseases. Meanwhile, even before all the diagnostic questions can be answered, we need research to answer the basic question of how patients respond to specific treatments – what clinical features predict what kind of respond to which treatments? This is, as I alluded to above, not necessarily the same question as one of diagnosis.

Now that is a long and arduous process.

Yes, but my personal belief is that there is enough information about ME available to at least give it a name and to treat it as a well defined syndrome, if not a discrete disease. I think that, if the will was there, there would be action. There is enough detailed information to make a clinical judgement that a well defined cluster of symptoms can lead to a diagnosis of ME. This is how the ICC has come about. It was from detailed and careful observation of many patients over a long period of time. And I think it's the approach that the CDC is now taking with regards to the new diagnostic criteria which they seem to be creating. This is not a new or novel illness. It's been around for decades. If no one can do better, in terms of defining a disease, then close and careful observation is the way to do it. That's how medicine has traditionally been done. There might be mistakes, but that doesn't matter. You use the best available information that you have, and as knowledge grows, the information can be updated.

So it's not that there isn't the information available, there's just a complete lack of will to do anything. This is mainly, I believe, because the psychiatric lobby has muddied the waters and successfully confused the medical field for decades.

The worst thing to do for a disease is to muddle the diagnosis with another disease. That leads to confusion and neglect.

But that's exactly what the psychiatric lobby has done. They've conflated maladaptive cognition and illness-beliefs, with a biomedical illness. So this has meant that progress has been completely halted for many years.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The Young ME Sufferers Trust said:
Scottish Parliament Cross Party Group on ME recent developments.
This statement may be circulated widely IN FULL AND WITH NO ALTERATIONS.
Meeting of Cross Party Group on ME, 19th September 2012
Prior to the main meeting, a sub-group meeting on ME had been split 3-3 with regard to the name and patient cohort of any future centre of excellence.
i. Mary Fee, Convenor of the CPG, who was at the subgroup meeting, stated that this must now go before the full CPG as a vote on the remit of the Group; she also made clear that neither she nor any other MSP would countenance a vote for ME and that such a result would close the CPG.
ii. Via the Secretariat, Mary Fee asked Lesley Scott, Scotland Representative of The Young ME Sufferers Trust to prepare the proposal for the vote.
iii. The Young ME Sufferers Trust submitted their proposal on the 9th September and it was distributed to the full membership, in its original form without any request for amendments, on the 10th.
iv. The voting options were:
1. "WHO ICD10 G93.3 neurological disease ME"
or
2. "umbrella term ME-CFS to include a spectrum of fatiguing conditions"
v. At the full CPG meeting of 19th September, MSPs once again stated their resistance to option 1, declaring that only by accepting ME-CFS would the CPG continue; this objection to neurological ME we were told was because government would only accept ME-CFS.
vi. When the vote was finally allowed to be completed, the result was an overwhelming victory for option 1, WHO ICD-10 G93.3 neurological ME.
Votes cast were 30 for, 5 against, 12 abstentions.
vii. The following day, again via the Secretariat, Mary Fee made it known to all CPG members that the MSPs were setting aside the landslide result in favour of neurological ME; that the MSPs would now set another vote for the remit of the group and would tell us which option they would be willing to accept.
viii. Over 20 CPG members signed an open letter to the Standards, Procedures and Public Appointments Committee to appraise them of events and make it known that should MSPs refuse to uphold the vote we could no longer have any confidence in Mary Fee as Convener to act for those with WHO ICD-10 G93.3 neurological ME.
ix. Mary Fee responded to this by defending the call for a second vote on the grounds that some people who had abstained were confused over the options. However, she went on "The options circulated appear clear and voting option 2 would appear to broadly follow the existing remit of the group". She stated her willingness to resign if it was the wish of the majority.
x. She was reminded of her previous declaration to stand down, made in public on two separate occasions, if the vote was for ME and that the majority had indeed voted for ME.
xi. Deputy Convener Siobhan McMahon MSP has since resigned, citing the open letter to the Standards Committee as a major factor.
Those are the facts.
Lesley Scott
Scotland Representative for The Young ME Sufferers Trust

It does seem like one big confusing mess.

Looking at this extract from the above quote:
The Young ME Sufferers Trust said:
Prior to the main meeting, a sub-group meeting on ME had been split 3-3 with regard to the name and patient cohort of any future centre of excellence.
It seems that the vote originated with regards to any future Centres of Excellence, and what illness they should focus on.
It seems a bit silly to throw the name into the mix for the vote.
The name issue and the WHO IDC10 G93.3 issue should have been voted on separately.

Also, the following seems to be ill-informed:
The Young ME Sufferers Trust said:
iv. The voting options were:
1. "WHO ICD10 G93.3 neurological disease ME"
or
2. "umbrella term ME-CFS to include a spectrum of fatiguing conditions"
The Young ME Sufferers Trust said:
MSPs once again stated their resistance to option 1, declaring that only by accepting ME-CFS would the CPG continue; this objection to neurological ME we were told was because government would only accept ME-CFS.
As far as I understand, the government accepts ICD10 G93.3, and has confirmed repeatedly that CFS/ME (as they call it) is a neurological disease. So the government does not accept that CFS/ME includes all fatiguing illnesses. 'CFS/ME' applies to ICD10 G93.3. That's my understanding anyway. (Maybe this is something we need to clarify with the UK government.)

So all the issues seemed to have been muddled.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
...maybe M.E/CFS advocacy could be going in the wrong direction and that having lost the CPG in Scotland, some degree of self reflection and criticsm might be in order.

I agree that there are various ways to go about doing advocacy work.
But I don't think that patient advocacy is the reason that there's been no progress for the past 3 decades.
From my point of view, it's clearly to do with powerful and sophisticated lobby groups, who repeatedly get the upper hand over patients.
Advocates could have behaved perfectly over the past three decades, and nothing would have been different.
If politicians refuse to accept the information presented to them, or refuse to act on it, then where does that leave advocates?
What should they do?
They can accept the politician's decisions, or they can lobby against them.

In the case of the CPG on ME, it seems that the convener wanted the group's remit to be for all fatiguing illnesses.
So what was the group to do about it if they didn't agree, other than express their opinions?

The vote was set up on an ill-informed basis.
The government does accept that G93.3 is a neurological condition.
And the name issue and the categorisation issue are separate.

IVI, patient advocacy is often polite and intelligent, and many patients have friendly relationships with politicians.
You shouldn't judge all advocacy on what you see and read on the forums.
Most advocacy work goes unseen.


The reason that the APPG meetings are in private is because the previously public meetings were made impossible by a small number of self appointed advocates - another triumph for impressing politicians on the need to work with M.E/CFS affected people. The APPG would never go down the route of voting on something that could have no meaningful outcome - it simply doesn't work in that way. There's no mystery involved, they are a rule based structure: http://www.parliament.uk/about/mps-and-lords/members/apg/

I don't think that voting for the remit to be based on WHO ICD10 G93.3 would be lead to a meaningless outcome.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I liked your above post Bob - the one including the release from Thyme's trust. I would add more as I don't think you've included quite all of the mess (read the letter from Mary Fee and the other from Carol Flack I think - total of three resignations now). There is of course the matter of complaint to Parliament and the 'actions' of a small few within the membership to consider. Have asked on MEA Facebook if someone, somewhere, ever took any minutes! These should have been taken as it was a formal meeting.

Dear Carol

I am writing to inform you of my decision to stand down as Convener of the Cross Party Group on M.E.

I have been considering this matter for some weeks now, however, the decision I have reached has been made somewhat easy for me as a result of the action of some members of the CPG in recent days.

I was very honest in my assessment of the CPG at the last meeting and therefore do not wish to reiterate my opinion here however I have been left stunned by the action of some individuals.

I find this action totally unacceptable and feel that there is now no realistic chance of the group continuing in its current form as a result.

I therefore resign my position and I hope you will accept my reasons for taking the action I have today.
Yours sincerely
(Signed, Mary Fee)

Dear Member,

It is with regret that I attach the following letter, from our Convener Mary Fee MSP, which I received this afternoon.

I should also add that on 8th October another of our MSP members, Elaine Smith announced her resignation from the CPG on M.E. following that of our Deputy Convener Siobhan McMahon.

Regards, Carol​

Some have now assumed this means the end of the Group. I've asked for confirmation of that also. Still, it's a mess whichever way you look at it.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I know someone who went to a GP with a lump and was told thats just a fat lump with no scans or anything. Later turned out to be cancer. Once the oncologists get a cancer patient they seem good but GPs can delay things.

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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Have asked on MEA Facebook if someone, somewhere, ever took any minutes! These should have been taken as it was a formal meeting.

They usually publish all the minutes on their website, but I imagine that they might be rather delayed this time as there's so much confusion.

Here's a bit of info:
"The Secretariat circulates the date, agenda and minutes of CPG meetings to MSPs and lay members once they have been approved by the Convener."
http://www.actionforme.org.uk/OneStopCMS/Core/TemplateHandler.aspx?NRMODE=Published&NRNODEGUID={C7B2FFE9-0F77-4FDD-B57C-DB6CD6134ACC}&NRORIGINALURL=/get-informed/regional-information/scotland/cross-party-group/cpg-meetings&NRCACHEHINT=NoModifyGuest

Some have now assumed this means the end of the Group. I've asked for confirmation of that also. Still, it's a mess whichever way you look at it.

I guess that if they can get any more MSPs involved, then it might continue. Otherwise, I should think that it will have to close. But I'm just guessing.

Lot's of questions.

Edit: Here's a bit of info:
"At least two of the elected Officers must be Members of the Scottish Parliament and one of these officers must be the Convener."
http://www.actionforme.org.uk/OneStopCMS/Core/TemplateHandler.aspx?NRMODE=Published&NRNODEGUID={C7B2FFE9-0F77-4FDD-B57C-DB6CD6134ACC}&NRORIGINALURL=/get-informed/regional-information/scotland/cross-party-group/cpg-meetings&NRCACHEHINT=NoModifyGuest
 
Messages
56
Sorry Adam, but I don't understand your reply, could you explain it? Thanks.

I was thinking about the type of questions that might be asked by 'one' about the 'perspective' of ME sufferers who report bad treatment by doctors.

Unfortunately IVI hasn't actually disabused me of my notion that those are the questions he might be asking.

There's also lot of assumptions made in IVI's posts about patients in the NHS, based on his experience only. But it appears a lot of people become unhappy with the NHS when they suffer the ill effects of negligence or prejudice, whatever the illness. When people do not suffer such, they are happy. It's quite simple really, and appears to be the general rule. But ME sufferers - they have something wrong with their attitudes because they report similar negative experiences? Even though we are all aware that there are massive problems with the way ME sufferers are treated? Even though IVI knows this too?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I was thinking about the type of questions that might be asked by 'one' about the 'perspective' of ME sufferers who report bad treatment by doctors.

Unfortunately IVI hasn't actually disabused me of my notion that those are the questions he might be asking.

There's also lot of assumptions made in IVI's posts about patients in the NHS, based on his experience only. But it appears a lot of people become unhappy with the NHS when they suffer the ill effects of negligence or prejudice, whatever the illness. When people do not suffer such, they are happy. It's quite simple really, and appears to be the general rule. But ME sufferers - they have something wrong with their attitudes because they report similar negative experiences? Even though we are all aware that there are massive problems with the way ME sufferers are treated? Even though IVI knows this too?

Yes, IVI reported that his personal experience with his doctor has been very good.
So, therefore, he concludes, there must be something wrong with the "perspective" of all the ME patients who complain about their treatment.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Yes, IVI reported that his personal experience with his doctor has been very good.
So, therefore, he concludes, there must be something wrong with the "perspective" of all the ME patients who complain about their treatment.


I don't actually think you're interpretation of that is correct, Bob. Unfortunately I am a bit bushed and need to rest up for a while. Suffice to say, that when it comes to - generally speaking - the NHS's 'treatment' of people with long term conditions - said 'treatment' leaves a lot to be desired from the patient perspective. What I mean is that: is our 'treatment' any different really than what is offered to others with a LTC? We all want more. Hell, the NHS are not 'even' adopting the NICE Guideline in full in every county, let alone PCT district etc. etc. etc. and NICE is all we have as a standard to hold them to.

Be back later....
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Buggar. Forgot what I was going to ask. Apparently, draft minutes were sent out to members. If Ski would post them (can post them) then that would presumably be of help to one and all. Assuming we are still interested :)
 

barbc56

Senior Member
Messages
3,657
Yes, IVI reported that his personal experience with his doctor has been very good.
So, therefore, he concludes, there must be something wrong with the "perspective" of all the ME patients who complain about their treatment.

Just an observation, but couldn't one say that you are doing the same thing except you conclude there must be something wrong with the perspective of all the ME/CFS patients who aren't complaining about their treatment and focusing on other matters.

We really have to be careful about guessing other's motives from their posts. It's only human that we do this but I think it's a good idea to keep in mind that our interpretation of what others are saying based is often influenced by on our own perspectives. My point is that making statementsi like the above just might be reading too much into what a poster is writing.

Barb C.:>)
 
Messages
56
Yes, IVI reported that his personal experience with his doctor has been very good.
So, therefore, he concludes, there must be something wrong with the "perspective" of all the ME patients who complain about their treatment.

That does seem to be the point he is making.

As far as I know there is not even any research showing ME patients more likely to complain then other patients (formally or in forums), even if 'one' might think they have more reason to, because of the way ME patients are treated in the UK.

Unless IVI is hanging out on other forums for loads of other illnesses (even stigmatised ones) I can't see how he can confidently even assume ME patients complain more, formally or in forums, compared to other groups.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Just an observation, but couldn't one say that you are doing the same thing except you conclude there must be something wrong with the perspective of all the ME/CFS patients who aren't complaining about their treatment and focusing on other matters.

Where, exactly, do I make that alleged 'conclusion' please Barb?

Please quote the alleged offending passage.

I don't make that conclusion, and you know it.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Just an observation, but couldn't one say that you are doing the same thing except you conclude there must be something wrong with the perspective of all the ME/CFS patients who aren't complaining about their treatment and focusing on other matters.

No, one could not say that I am accusing patients of not having an adequate understanding of their first-hand experiences, because I have clearly not questioned the medical experiences of anyone posting on this thread.

I have acknowledged that IVI receives good treatment from his doctor.

And I have said that there are good doctors.

I've only said that most of the patients who I have spoken to, have had bad experiences.

That's a simple observation.

IVI was not making an observation of other patients. He was questioning their 'perspectives', on the basis that they are not identical to his personal experiences. Or he was questioning patients' perspectives on the basis that ME patients claim they are 'uniquely neglected'. (Which is a claim that I don't think I've seen on this thread.) Whichever his basis, he is questioning patients' perspectives. On a forum like this, one needs to chose one's words carefully, if one is to accuse all the forum members of having issues of 'perspective' surrounding their personal experiences of health and treatment.


We really have to be careful about guessing other's motives from their posts. It's only human that we do this but I think it's a good idea to keep in mind that our interpretation of what others are saying based is often influenced by on our own perspectives. My point is that making statementsi like the above just might be reading too much into what a poster is writing.

IVI's post seemed quite clear to me, but, sure, I might have misinterpreted it.
Others have made the same interpretation.
IVI can clarify if he wishes to.

I think my interpretation was reasonable:
I don't recognise most of the negative comments made on this forum about UK doctors... [...] 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.

Like I said earlier, one needs to be very careful with one's wording if one is to question the integrity of a whole patient 'group'.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
You can replace "our community" with "our communities". It would have the same meaning to me.
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Yep, previously a staunch supporter and political voice, now ALIENATED.

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 (what seems to be) an inappropriate vote.


(This post is purposely one-sided - I wanted to give some balance to the quoted post.)
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
The 25% Group is just a support group for people who are severely affected. It's perfectly OK for an organisation to focus their activities on a group with particular needs. That doesn't make them divisive.
Yes Bob, it does, particularly when they dictate the terms of their separation and demand privilege from the public purse.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
But how does that rest your case, Firestormm?

"According to reports, Mrs Fee’s resignation follows a vote by members of the group which was overwhelmingly in favour for the use of “WHO ICD10 G93.3 neurological disease ME”. There were 30 votes in favour, five against and 12 abstentions."
http://www.meassociation.org.uk/?p=13250

The WHO ICD10 G93.3 covers CFS and ME and PVFS.
It only excludes the wide range of other fatiguing illnesses, not related to CFS.

I thought you had been arguing in favour of using WHO ICD10 G93.3.

I think the clue is in 'neurological disease ME', that's not what ICD10 93.3 represents, as you note, so why is it included in this way.
Of course we could take your earlier tack of just ignoring the text as it's incomplete and you've not found a fuller text or heard what the other groups.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
OK, I think I'm beginning to understand it now.

The vote seems to have been an attempt to get the 'CPG on ME' to focus on the WHO ICD10 G93.3 categorisation of CFS/ME/PVFS. And to exclude all fatiguing illnesses that are not related to G93.3 CFS/ME/PVFS.

In other words it seems to be about getting the CPG on ME to focus on CFS/ME/PVFS.

I think the name issue might be a red-herring here.
The vote seems to have involved focusing on the name 'ME', to highlight the desire to focus on G93.3.
But the name issue doesn't seem to be the main thrust of the vote, and it doesn't seem to be about separating ME from CFS.

I might have misinterpreted it though.


Edit: Just seen your last post, Firestormm. Thanks for that info. I think it confirms what I've said in this post. That's my interpretation, anyway.

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.

If not then as someone has already noted this is as stupendous own goal with real consequences for those of us with this disease in Scotland.