Why do we have to be expert patients?

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by goblinff on Thu Aug 15, 2013 6:50 pm

Why do we have to be expert patients?

I'm finding this clinic really useful. There's lots of things I didn't know or assumed it was just me. And lots of things I'm grateful I don't have!

But what's really struck me on reading what people are saying, is how difficult it appears to be for people to get any help, never mind adequate help to stay where they are or even to get better. On the one hand, it's reassuring that it's not just me that's having trouble, on the other, it's worrying...

I know the ME Association are sending out the purple booklet, and the websites supporting this clinic all have information about what help is available, but it's obvious that I'm not the only one who's a bit bewildered about the nuts & bolts of getting help and more importantly how to 'go around' unhelpful professionals who are supposed to be a gateway, rather than a barrier, to available help.

I now realise that personally I was very lucky to have a GP who asked me to tell him where I wanted referrals for back at the start...

I don't understand why ME/CFS/Fibro people have to put so much effort into getting help in the first place, never mind trying to access more of the same or new help as they go along - whether that's from GPs, specialist clinics or social services or for benefits etc. I can see it crosses specialisms and doesn't fit with the 'we've treated you, you are cured, off you go' NHS model, but even so?

As an analogy, it's not far off me going to the A&E, they telling me I've got a broken leg, and asking me how to fix it, telling me they can't do anything, then sending me home with crutches that melt in the rain, and refusing to tell me if I can have any replacements or not thereafter. I can accept the 'can't do anything about it right now' because there hasn't been the research. But the rest of it? I feel as though there's a huge number of people being failed, and as a result of that, any professional who is trying to help - gets tarred with the same brush and lamped, which is unfair.

An example personal to me is having a CFS/ME diagnosis (ignoring the politics & semantics of the wording/ label used), being on the PACE Trial in 2007/08 in London. Moving to another area (Northeast) and my new GP having to wrangle with the specialist (and lose) over whether or not I need a whole re-diagnosis (because I might have been misdiagnosed) and they can't offer anything even over the telephone to get me sufficiently stable to stop being housebound and go & see them, until they've diagnosed me. But to diagnose me I have to go and see them. But I'm housebound. Catch 22 or Alice in Wonderland. Take your pick.

I can kind of see the point that any tests done now will exclude anything new, (not that this was the reason given by the specialist, that's my rosetinting of something I can't control) but it really really feels like the last 5 years of effort that I've put into it, and the effort that the London professionals put into it are just being disregarded. And this is by people who do actually agree CFS/ME exists. I am SO fed up of pushing rocks up hills. (trying and failing not to whine here).

Are there any formal NHS initiatives in the pipeline that have sufficient weight behind them so that in future people don't have to fight (when they're already knackered) for help that they are entitled to? And for some clarity and consistency in the help that's available, how often and how long for? Is there any light at the end of this tunnel?

Does anyone do a Helpsheet that explains the steps you can go through if a medical professional along the line isn't co-operating? Because the one thing everyone on this Clinic shouldn't have to do (and doesn't have the energy or brainpower necessarily on the right day if at all - and obviously isn't managing to do from the questions raised) is reinvent the wheel to find out!

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by Housemouse on Thu Aug 15, 2013 9:06 pm

Re: Why do we have to be expert patients?


I just wanted to say, "Well said" - although I was 'lucky' (hmm if anyone of us with M.E. can be considered 'lucky') in that my GP - who diagnosed and Consultant and nhs have been super and albeit can't cure me or stop the worsening - I had and always experienced Clinicians who took 'it' and me seriously and helped with symptoms, pacing etc., to the point where I was actually getting some relief from symptoms/symptom severity throughout a day to the point where I could do some tiny voluntary work from home - until I was in need of benefits - had to be interviewed, examined etc., etc., and was met with everything from disbelief to blantnt hositility, pushed beyond my limits etc., etc., . The symptoms have been so numerous over the years that the ME charities have been my main source of information. I think this Clinic is a wonderful idea - and a myriad of different things I have wondered about - other people are now asking and receiving answers from very reliable Clinicians and Experts. You have a good point in tthat during my years of very severe symptoms - I would not have been able to use the computer and I do 'shed a tear' for those of us 'out there' who are unable to go online or find information. Thank goodness for the nhs and the ME Charities and Research - I just wish the pharmaceutical company would pile in some resoucres. Best Wishes

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Dr Charles Shepherd
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by Dr Charles Shepherd on Thu Aug 15, 2013 11:16 pm

Re: Why do we have to be expert patients?

You are both making some very valid points about the postcode lottery that many people with ME/CFS still face in getting help with diagnosis and management

In fact, some of the hospital based services that have been set up in recent years have been under threat of reduction or even closure - which is clearly unacceptable

And with the onset of GP Commissioning it's impossible to predict what decisions are now going to be made at a local level on NHS sevice provision

One point I will make is that we have an All Party Parliamentary Group on ME at Westminster. The group is small but active and very committed to trying to help pursue concerns about benefits, research, services etc at a political level. We have an excellent Chair: Annette Brooke MP. And the Secretariat is provided by AfME and MEA.

But how many people have met, or tried to meet, their MP to discuss concerns about benefits, research, services etc? And how many have asked their MP to join the APPG on ME at Westminster?

The APPG has done some valuable work - the Report on NHS Service Provision is good example

Minutes from APPG meetings can be found in the news archive on the MEA website. The last full meeting was devoted to severe ME and contained a very powerful presentation from Prof Derek Pheby.

MEA website: http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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by Dr Charles Shepherd on Thu Aug 15, 2013 11:58 pm

Re: Why do we have to be expert patients?

APPG Minutes for presentation on severe ME by Professor Derek Pheby:

All Party Parliamentary Group on M.E.

Chair: Annette Brooke MP
Vice-Chairs: Countess of Mar
Ian Swales MP
Secretary: Russell Brown MP

Meeting held Wednesday 13th March at 2.30pm,
Room O, Portcullis House, Westminster

Chair-Approved Minutes


Annette Brooke MP
Russell Brown MP


Sonya Chowdhury (Action for M.E).
Charles Shepherd (ME Association)
Nicki Strong (ME Association)


Sue Waddle (ME Research UK)
Janice Kent (ReMEmber UK)
Bill Kent (ReMEmber UK)
Christine Harrison (BRAME)
Doris Jones (25% Group)
Philida Bunkle (Invest in ME)
Mary Jane Willows (AYME)


Derek Pheby (Visiting Professor of Epidemiology, Buckinghamshire New University; Action for ME)
Clare McDermott (University of Southampton)
Sarah Frossell (Dorset Bespoke)
Tim Stirgess (Dorset ME Support Group)


Countess of Mar
Graham Brady MP
Dave Anderson MP
Adrian Sanders MP
John Thurso MP
Priti Patel MP
Hywel Williams MP
The Rt Hon Nicholas Soames MP
Oliver Heald MP
Sir Bob Russell MP
Elfyn Llwyd MP
Lord Puttnam
Margot James MP
Karen Lumley MP
Jane Colby (Tymes Trust)

1. Welcome by the Chair

The Chair welcomed the group and said that she was pleased that we were now holding a meeting to specifically focus on the needs of those affected by severe M.E. She outlined that this APPG has a commitment to achievements, to develop an understanding of needs, to promote more research, and to address issues with ATOS and the wider benefits system.

Since the last meeting, the Officers have been invited by Atos to go to an Assessment Centre at Marylebone.

On behalf of the Group, the Chair wanted to put on record her grateful thanks to Tristana for her previous secretariat support.

2. Research relating to those who are severely affected by M.E.

The Chair acknowledged that there is a lot to do to move the agenda on and we need to consider in our own spheres what role we play, including parliamentarians, and what responsibility we have to this group of people with M.E. The Chair introduced the first speaker.

2.1 Professor Derek Pheby, Visiting Professor of Epidemiology, Buckinghamshire New University

Prof. Pheby’s presentation, in his own words
I am grateful for the opportunity to talk about severe ME, and intend firstly to describe research in which I was involved into risk factors for severe ME, which was funded by the ME Association, and the results of which were published in 2009, and secondly to discuss the impact severe ME has on the lives of people with ME and their families, speaking from my own experience as this illustrates in extreme form what may happen when things go wrong.

1) Prevalence of severe ME.

Conventionally, severe ME (i.e. ME that renders people housebound or bedbound) is considered to affect about 25% of people with ME. If this were so, and there are about 250,000 people with ME in the country, then some 60,000 would have severe ME. However, there is little empirical evidence to support this contention, and there are problems with both the numerator and the denominator, the latter being particularly prone to variations in case definition. It seems to arise from cherry-picking the world scientific literature in order to find evidence to support an assumption initially made. In this case, a study by Jason and others in Chicago suggested a headline prevalence of 0.42%, which applied to the UK population of sixty million would suggest something like 252,000 people with ME in this country. However, this is no way to do science, and no substitute for proper, empirical research in our own population.

2) Risk factors for severe ME

Firstly, our research gave us the opportunity to nail some misconceptions. We were able to demonstrate that developing severe ME was nothing to do with premorbid personality (though doing research in this area is treading on eggshells, as even to ask questions leads some people to conclude that we must be committed to a particular view of the situation). We found that having a family member with ME predisposed to severe illness. In particular, having a mother with ME was a risk factor for severe ME, but not having a father with ME. This is interesting, in view of the theory that mitochondrial dysfunction may be something to do with the pathogenesis of ME, as mitochondrial DNA is entirely of maternal origin. However, the most important factor predisposing to severe ME appeared to be inappropriate treatment in the early stages of the illness. People with severe ME were far more likely than people with mild or moderate disease to report problems over education, benefits, and every other area of life except for work. People with mild or moderate disease were more likely to report problems at work, and this is probably due to the ‘healthy worker effect’, where people with severe disease simply drop out of the work force. People with severe disease reported worse relationships with their GPs than people with mild or moderate disease in the early stages of the disease, and more involvement of psychiatrists and social workers in their treatment.

3) Further research needed

Our study was largely hypothesis-generating, and research is now needed to test these hypotheses. This requires larger samples and better categorisation of cases. We need to resolve also whether we are dealing with multiple underlying pathologies or not, which means more biomedical research on underlying disease mechanisms. We also need training programmes (see (4) below), and these should be subjected to evaluative research to assess their effectiveness.

4) Lack of understanding by professionals

We need better training of all types of professionals involved in the care of people with ME, not just of doctors but also for example of teachers, clinical and educational psychologists and social workers, because it is clear that lack of understanding affecting treatment in the early stages of the illness contributes significantly to morbidity. This would be necessary even if a ‘magic bullet’ were discovered tomorrow, because it would still take ten to fifteen years before such a product was available for routine clinical practice, and people have care needs now, and simply avoidance of bad practice would be a major contributory factor to improving the quality of care.

5) Impact on lives

In respect of this, I can speak from personal experience, which I think exemplifies and illustrates in extreme form many of the problems that occur for people with severe ME and their families. My son fell ill at the age of eight; he is now forty-two. When he became ill, we immediately became public property, and there was no confidentiality. Social services, without our knowledge or consent, got involved from the outset. We were threatened with care proceedings, and our son fell into a nest of paedophiles. A secret case conference was held, which was minuted, and at which the county solicitor was present. The County Council lied repeatedly about this, and for twenty-five years denied it had even taken place. Eventually, the minutes were disclosed to us under the Data Protection act, and we found we were one day out in our estimation, on the basis that there had been a sudden upsurge in activity at that point, as to when it had taken place. The county solicitor then argued that this had not been a ‘formal’ child protection case conference, which was hypocritical, as this took place in 1979, and it was a further ten years before the distinction between formal and informal case conferences was enacted in the Children Act 1989.

This whole affair dominated our lives for years. It blighted the careers of both my wife and myself, and our children’s social and educational development. For example, the university applications of our younger son, who had never been ill, was undermined by the Principal Educational Psychologist for the county, who muddled him up with our other son, seven years older, and proceeded to tell his school about his alleged history of “school phobia”, which none of our children ever had. Fighting off these attacks cost us a million pounds that we did not have. As a result, we have not been able to do any of the things we wanted to do in life, and given the amount of time this has taken out of lives, we now know that we never will.

The threat to break up our family was real, and we determined that we would not permit it to happen. We kept our cars permanently topped up with petrol, and our passports at the ready, with a view to my wife removing our children to France at the least indication that the threats were to be acted upon, so that I could stay behind to fight contempt proceedings, to which I would have been party, rather than care proceedings to which I would not at the time have been party. Our French friends were very supportive, including Amnesty International, which promised us succour if need arose, but questioned what else we could expect from ‘la perfide Albion’.

In England, by contrast, as whistle-blowers we were treated with contempt at all levels from cabinet ministers down to local managers in social services. There seemed no end to the dirty tricks, and we even found forged documents, including for example a letter sent to a consultant psychiatrist in her private capacity, ostensibly from my wife, thanking her for her psychiatric care. This was a crude forgery, the handwriting bore no relation to my wife’s, and it was written at a time when my wife was in hospital, where she remained for five months following a serious hand injury as a result of which she was at that time unable to write.

Eventually, after twenty-six years, an alternative dispute resolution process took place, following which public letters of apology were sent to all five members of the family from Sir Nigel Crisp, the then Chief Executive of the NHS, and also on behalf of nine NHS trusts and agencies. The County Council was not party to this. I am not at liberty to disclose other aspects of the settlement, and cannot even say whether I am subject to a gagging clause or not. I would like lessons to be learned, and would make the general point, however, that may or may not be applicable to my case, that gagging clauses should not be used to cover up criminal wrongdoing.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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by goblinff on Fri Aug 16, 2013 8:52 am

Re: Why do we have to be expert patients?

Thanks Mousehouse. It's fortunate the Clinic is this week, because for the last few months (until the anti-depressants kicked in) I wouldn't have been in a fit state to even try joining in. I suspect I will 'boom & bust' this week and return to incoherence next week, but it's worth the payback if I end up understanding more about the whole thing. In an ideal world I wouldn't need to know anything about ME/CFS, I'd just get cured and have my life back.

Thankyou for the response Dr Sheppard.
Can I ask, is it normal for the APPG to be so, well, small/ sparsely attended? The only MPs attending seemed to be the ones running it? (though presumably the Minutes are more widely circulated). Does this affect their effectiveness? Once they've done their factfinding/ explorations, what happens next?

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by Dr Charles Shepherd on Fri Aug 16, 2013 9:38 am

Re: Why do we have to be expert patients?

I'm afraid the parliamentary attendance is usually in single figures - mainly consisting of the officers and a few regular MPs

We have a good number of APPG members who receive Minutes and other information from the Secretariat (AfME and MEA) but seldom get to meetings

To be fair to MPs, many of whom really do work hard for what they believe in, there are always an enormous number of meetings and activities taking place in and around Westminster - and there are an equally large number of APPGs

So I think there is also a duty on people with ME/CFS to try and meet their MP - either individually or in a local group - to make them aware of problems re benefits, research, services and get them to join (and attend) the APPG on ME
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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by ChrisofCabra on Fri Aug 16, 2013 4:29 pm

Re: Why do we have to be expert patients?

Two things:

Firstly a statement of general support for your point,
and to say the best information, practical advice and help I have had, by far, has come from a peer group of CFS/ME sufferers on-line, not through any NHS channel with, latterly, one major exception: I now have a superb Occupational Therapist who visits or phones regularly, depending on whether I am well enough for the former.
I think I've been lucky, there.

And secondly:
goblinff wrote:... they can't offer anything even over the telephone to get me sufficiently stable to stop being housebound and go & see them, until they've diagnosed me. But to diagnose me I have to go and see them. But I'm housebound. Catch 22 or Alice in Wonderland. Take your pick.
You've noticed. Catch 22 crops up again and again with this condition.
I want to study-up and understand my CFS, but I have CFS.

Rearranging the house so daily living takes a bit less energy... is an energy expensive project.

Choice for visitors: don't explain about company costing energy, so more is available, but then the visit is likely to be longer: "but you look OK".
Or try and explain, which eats into time and energy available for a visit without payback (invisible to the visitor who has now left.)

And so it goes!


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