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Cross Party Group on ME

Bob

Senior Member
Messages
16,455
Location
England (south coast)
To follow on from what ukxmrv has said...

Probably about 99% of us get our treatment through the NHS, which is completely charge-free, paid through taxes. Our NHS system is quite standardised, and so we all receive very similar treatment. A few people supplement their NHS care with a private doctor.

We all see a General Practitioner, as our regular contact, and first point of call, and we've nearly all had really appalling experiences with them.
They don't offer much beyond blank stares and shrugs.
If you are lucky, and you can shop around in your area, then it's possible to find some nice ones, but they still don't offer much treatment.
They just give very basic care, such as antidepressants and pain meds etc.
They do a few basic blood tests, to check for thyroid dysfunction etc.

If you are lucky, and live in a densely populated area, then there is sometimes a small choice of doctors in your area to choose from.

Unlike the USA system, our doctors aren't motivated to treat us because they don't receive extra money for treating individual patients. So we usually just irritate them, which is usually visibly expressed via their facial expressions.

The fatigue clinics are all run on the cognitive behavioural model, and I don't think any of them offer anything beyond CBT, GET, physiotherapy, occupational therapy and counselling. My local service only offered group CBT/GET.

My appointments with the fatigue clinic were only for 2 hours of group CBT/GET sessions every other week. So you continue to see your GP for treatment.

The clinics aren't involved in any research. They're very basic.
 

barbc56

Senior Member
Messages
3,657
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

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.

Barb C.:>)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
This remains a mess and the following apparent statement from the Scottish Representative of Thyme's Trust only adds to my own confusion:

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 ³The options circulated appear clear and voting option 2 would appear to broadly follow the existing remit of the group². 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

Comment from Charles Shepherd ME Association on Facebook:

This is very bad news for Scotland because I assume it means that organised parliamentary representation for people with ME/CFS will now disappear. By contrast I was at a very constructive and proactive business meeting of the APPG on ME at Westminster this morning where we discussed the current situation regarding benefits, children and adolescents, research and services - along with a preliminary programme for meetings and actions over the coming year....


The APPG at Westminster is called the APPG on ME but it does not take a dogmatic position on nomenclature - recognising the fact that almost all ME/CFS research is carried out on people with CFS and that most doctors use the term CFS (or ME/CFS) when it comes to both diagnosis and management of patients.

Clare - Could I first refer you back to my previous posting.


Out in the real world almost all ME/CFS research is carried out on people with research defined (i.e. Fukuda) CFS and doctors diagnose people with (clinical) ME as having CFS or sometimes ME/CFS - many still refusing to use the term ME, or will only use it with reluctance.

As I have said on many many occasions in the past the only way to sort out this ME/CFS mess is to identify clinical and pathological sub-groups under the ME/CFS umbrella.

Until you have a clear pathological abnormality, or biomarker, that distinguishes ME from CFS there is no chance whatsoever of persuading the medical establishment, or health department, that ME and CFS are different illnesses requiring differing approaches to management.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Lesley Scott attends the XPG so I'd be happy to read her account of what happened. It's good that someone who was active in the process has written a statement.

Not sure why you included the one from Dr Shepherd who doesn't attend the XPG. He doesn't mention "fatiguing conditions" which is as far as I am aware what the Scots vote hinged on. Obviously I'd like more comment from the people at the XPG to see if I am reading this correctly.

The English APPG has never taken a vote on the matter and no members of the public are allowed into the meetings. It may be that if a similar vote was taken there the result would be the same as the Scots XPG.
 
Messages
646
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.
And frequently people presenting with symptoms that later attract a diagnosis of (as it is now in the UK) CFS/M.E , are referred for full hospital based exclusionary testing. There are some GPs that unfortunately feel free to diagnose on the basis of simple blood tests , although where the symptomology is limited then it has to be accepted that referral for speciliast investigation (MRI, digestive tract radiology, etc) may not be warranted. Evidence that M.E is a widely occuring misdiagnosis ( http://www.meresearch.org.uk/information/publications/misdiagnosis.html ) of other conditions should lead to a more cautious approach from GPs in relying on their own diagnostic capacities, and just today it's been announced that UK doctors will be subject to some of the most rigorous prefessessional re-assessments anywhere ( http://www.bbc.co.uk/news/health-19992538 - apologies for disturbing politician photo on link)

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
 
Messages
56
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

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?'
 
Messages
646
The English APPG has never taken a vote on the matter and no members of the public are allowed into the meetings. It may be that if a similar vote was taken there the result would be the same as the Scots XPG.
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/

IVI
 

PhoenixDown

Senior Member
Messages
456
Location
UK
... 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.
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?
 
Messages
646
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?'
I guess if that's your only conception then you would have a problem with even allowing the heresy of of even allowing that 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.

If M.E/CFS patients are to engage effectively with politicians, health service administrators and researchers, then the references used to support that engagement have to be to points which are of general experience. If M.E/CFS patients are genuinely a uniquely oppressed minority, then there has to be something which demonstrates that in terms of a social reference that everyone will accept. My personal experience is that in the UK, M.E/CFS patients are not a uniquely oppressed minority and that those who advance such a perspective not only misrepresent the reality of the NHS, but are presenting a position that is in terms of advocacy, impossible to advance as a basis for engagement with politicians, health service administrators and researchers.

No one believes that M.E/CFS is treated well, whether in the NHS or anywhere else. The question in 2012 is, amongst all the other demands on the public finances, how is M.E/CFS advocacy to effectively engage with politicians, health service administrators and researchers ? We have evidence from Scotland of an epic fail, while in contrast from Westminster, we have evidence of a modest success (APPG ), that ought to inform our thinking and what is supported in future. Solipsistic experience of GP treatment (mine or anyone elses) can't sensibly inform advocacy, and even where research may point to a systemic failing, using arguments that have no reference to wider patient exprience or societal perception are not going sere thecause of effective engagement. Evidence of infance deaths (http://www.bristol-inquiry.org.uk/images/sem7/0002/sem70002 (0115-0122).pdf ) or abuse of the elderly (http://www.bbc.co.uk/news/health-18563885) can be used to 'batter' bad practice out of existance, but a population that can easily be characterised as a bunch of middle class whingers, lacks the credibility to 'change the system' overnight. The General Public certainly would not understand the 'my GP is horrible to me' proposition, and what most people want from their GP is simply 'more time'. Advocating on the basis of something that no one else is going to believe/accept is not only pointless, it actually serve as a negative, making the speaker untrustworthy in the eyes of the audience. It's a daft way to go about things.

IVI
 
Messages
646
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.
That's a great bit of rhetoric, and serves extremely well when the audience to be engaged identifies with the perspective. But rallying the troops is irrelevant if they have nothing effective to fight with. The reality is we can not win anything by 'fighting', frustrating as it is, from our 'weak' position we have to seek positive engagement with wht some on 'our' side are ready to define as the enemy. That means using their language, not ours and their cultural references not ours. Grand oppositional rhetoric has no use.

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?
From the subjective experience of every other person who engages with a health service, because of ill health or disability needs - "life is crap". M.E/CFS patients can certainly describe some unusual problems, but from the point of view of the guy were sat next to in waiting room his mother's worsening Alzheimer's is as bad an issue as our having lack of sympathy, or for the women on the other side, her distressing lack of bladder control is as upsetting as our having no treatment. Suffering is personal - but one can rarely translate that solipsistic misery into something that impresses other people who do not share that precise misery -for that it needs something major, slavery, famine etc. Or a threat of the high probability of an eventual direct sharing of the misery - which is why cancer gets so much 'sympathy'. And at the level of Primary Health Care many cancers go undiagnosed, so a cancer patient may have exactly the experience of 'not being believed' - you see "life really is crap" and the exprience is spread wide. Arguing that "life is for you especially bad" just doesn't attract sympathy, because it's bad for everyone.

Hanging around on internet forums and reminding each other what a terribe time we have, is no way to produce a blue print for advocacy, that requires exterior reference.

IVI
 

user9876

Senior Member
Messages
4,556
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

Its not just the needs of one group of patients that are neglected by GPs in the UK. Many GPs are extremely poor and refuse to refer on to approprate specialties. People with ME have a particularly bad time but there are so many GPs who don't do there job and are not held to account for not doing so. I've heared so many people with negative experiances of GPs.

The General Public certainly would not understand the 'my GP is horrible to me' proposition, and what most people want from their GP is simply 'more time'. Advocating on the basis of something that no one else is going to believe/accept is not only pointless, it actually serve as a negative, making the speaker untrustworthy in the eyes of the audience. It's a daft way to go about things.

IVI

I think a surprising number of people do understand this. There are two separate points though. The first is the lack of accountability for GPs and I think many people who have had serious health issues understand this point. Speaking to some GPs I know that there are practices that have a very bad reputation although no one is willing to do anything about it. This is a general issue that needs to be addressed. Perhaps it will be as the number of complaints about doctors has risen massively and the revalidation process may help.

The second point is about GPs attitudes to ME and the training material on which they rely.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
you see "life really is crap" and the exprience is spread wide
Those mistakes & problems are hardly distributed evenly throughout different disease categories, spare me the "life isn't fair" lecture, I know others have an axe to grind too. I guess my grievance with your post was that you refused to acknowledge the more blatant unfair treatment towards these illnesses (Not just CFS/ME but Fibromylagia, MCS & more) the illnesses where patients are seen as no longer possessing the faculty to know how ill they are and whether their symptoms have worsened or not, all without trial of course.

I agree we need a new model or blue print for advocacy. I think there's a saying about trying the same thing over & over and then expecting a different result. I my self tire of the same old WHO 1969 argument, if anything because it is quite apparent that when it comes to M.E. the World Health Organisation doesn't so much as posses the persuasive prowess to convince a fly to land on a piece of shit. They've had over 40 years to convince the world that M.E isn't somatizing or hypochondria and quite frankly they've failed miserably.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
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?'

Sorry Adam, but I don't understand your reply, could you explain it? Thanks.
 
Messages
2
I got tired reading the thread so apologies if others have covered this.

1 - you don't need an invite - anyone can ask to join the CPG. I did (but never managed to attend, though I did get papers)

2 - best routes for lobbying for change are (in no order) directly to a Minister,get a Committee to lobby the Minister, get an Msp to lobby, a very high profile person or the media. CPG is not the sole - or nec the most effective route

3 - in practice our diagnoses vary - I have sick notes saying ME, CFS and post viral fatigue. As no distinction is drawn (rightly or wrongly) we can't lobby for differentiated treatment until we have accurate diagnoses for all

4 - this stemmed from the sub-group which was (I think) trying to get the needs assessment rolled out. I had huge reservations about the quality of that consultation process, and not enough knowledge to know whether the recs were sensible. But it did recommend a particular definition (CCC I think but not sure). So if that definition was acceptable, why not go with that? If not lobby against it. But if you set up a sub-group to push for implementation of the needs assessment, it rather suggests that you agree with its definition.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I got tired reading the thread so apologies if others have covered this.

1 - you don't need an invite - anyone can ask to join the CPG. I did (but never managed to attend, though I did get papers)

2 - best routes for lobbying for change are (in no order) directly to a Minister,get a Committee to lobby the Minister, get an Msp to lobby, a very high profile person or the media. CPG is not the sole - or nec the most effective route

3 - in practice our diagnoses vary - I have sick notes saying ME, CFS and post viral fatigue. As no distinction is drawn (rightly or wrongly) we can't lobby for differentiated treatment until we have accurate diagnoses for all

4 - this stemmed from the sub-group which was (I think) trying to get the needs assessment rolled out. I had huge reservations about the quality of that consultation process, and not enough knowledge to know whether the recs were sensible. But it did recommend a particular definition (CCC I think but not sure). So if that definition was acceptable, why not go with that? If not lobby against it. But if you set up a sub-group to push for implementation of the needs assessment, it rather suggests that you agree with its definition.

Thanks for the added info. there Ski. Not sure I follow, point 4. What's this 'needs assessment'? And if it related to the CCC which is ME/CFS - was it therefore actually about 'ME' at all? Sorry. This has all rather got me confused as others this morning were citing the ICCME for some obscure reason.

Do you think they will ever post any minutes? Who does the minute-taking etc. for this group? Is there a website or something for them?

Ooopppsss lots of questions. My apologies. :)
 

ukxmrv

Senior Member
Messages
4,413
Location
London
The APPG on ME was badly chaired at times but the ordinary patients who attended were usually well behaved. I did see bad behaviour from a few of the MPs there and from a very few patients. If it had been Chaired properly and patients given input into the agenda and chances to speak on important issues then it would have gone much better.

It's only the opinion of a few people that patients behaviour was poor. If individual people acted badly then they should have been asked to leave.

From my experience with the APPG it appeared that some of the charities and some of the MP's didn't like hearing what patients wanted to have addressed at the meetings so closed them.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
IVI, when my husband was being treated for cancer by the NHS he wished and said so vocally at times that he would like me to be treated in the same way (if not better) one day.

A group of cancer patients (and we went groups) simply does not have the same stories of everyday neglect, predjudice, mistreatment, cruelty and ignorance that any group of ME patients will have to tell.

Having sat through both groups my husband felt the deep injustice that had been done to PWME in the UK.
 

user9876

Senior Member
Messages
4,556
IVI, when my husband was being treated for cancer by the NHS he wished and said so vocally at times that he would like me to be treated in the same way (if not better) one day.

A group of cancer patients (and we went groups) simply does not have the same stories of everyday neglect, predjudice, mistreatment, cruelty and ignorance that any group of ME patients will have to tell.

Having sat through both groups my husband felt the deep injustice that had been done to PWME in the UK.
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.
 

Bob

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

Fair questions Barb.

My answer was a bit one-sided, because I was only discussing my experiences with ME.

I actually love the NHS, and I wouldn't want another system.

I think it's fair to say that most Brits have a deep affection for the NHS, as we are all born to it, and our children and parents are looked after by it. Obviously, I can't speak for everyone, but I think it's fair to say that.

If you've got an acute medical problem, such as a heart problem, or cancer, or you need an operation, or drugs for anything, then the NHS is always there for all of us, free at the point of need for all citizens. The same quality of service is given to all citizens, regardless of means. I think it even looks after other chronic illnesses pretty well, such as asthma, MS, Parkinsons etc.

The NHS is not perfect but we are usually willing to put up with imperfections in the service, because it is free, as long as the treatment is top quality.

But for ME, I think that nearly all the people I have spoken to, have had an appalling experience. Some worse than others. And most people I know have had to change their doctor.

My first doctor really did shrug and give me a blank stare.
He offered me no information about ME, and didn't even diagnose me. I diagnosed myself, and told him that I had ME, and no more was said about it.
I think it was a particularly bad surgery that I was at, but I don't think my experience was uncommon.

My new doctor is friendly and sympathetic, but admits she can do nothing to help, unless it's the usual sleep/pain meds etc. I don't mind that though. At least she is honest and seems to care, and I leave the surgery feeling like I've been treated like a human being.

But even she doesn't believe that there could be an endocrine element to ME, even though I have had fluctuating thyroid levels, and she can't accept that the two are related. Fair enough, her training wouldn't tell her that ME might be related to fluctuating endocrine levels, but because our GPs are taught that it is a psychological illness, then they can't entertain the possibility that any physical issues are related to 'CFS', as they call it. Some GPs might be more flexible in their thinking, but I don't think many are.

Yes, our GPs do offer us pain meds etc. So we do get more than CBT/GET. It's just the specialist services that don't offer any meds.

I think our complaints usually relate to the lack of belief that CFS/ME is a serious illness, the dismissive attitude, the lack of information, the lack of insight or understanding, and the lack of sympathy. All this together, makes you feel like you are being severely neglected. Many of us change doctors to find a more sympathetic one.

Also, the common belief that CFS/ME is a psychological condition often leads to conflict between patient and doctor.


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.

I agree with IVI, in so far as he says that the NHS often gives a top quality service.

But his comments about the perspective of our particular patient group is out of order.

I know that my GP can't offer me any serious treatment for ME, but when I first became ill, I would have been satisfied with a sympathetic ear, a caring approach, the offer of some counselling, polite and helpful reception staff, and some information about ME and support groups.

None of that was forthcoming. I was on my own. My doctor was bad anyway, and the ME seemed to bring out the worst in him. His training was clearly inadequate, and he was clearly out of his depth, and didn't have a clue about how to deal with it. I was ill, and he didn't know what to do. I was given zero information.