Gary Burgess - The ME show, and updates about Gary's health.

Suffolkres · Feb 11, 2019

Sly Saint said: ↑

sorry; it wasn't intended as a criticism (or demand).
It's just that we sometimes hear from people who find videos and podcasts difficult and just wondered if you had had any requests for them.
I won't make any promises, but am willing to give it a go if you think they would be useful.
Click to expand...

Oh yes, please have a go! Have you software to do this?

I ask as Russell F kindly did a transcript for my interview with the BBC on NICE etc. i now need to nail Waveney CCG Director of Commissioning at a Joint Scrutiny meeting, with a verbatim account of her admitting their faults and transgressions.......!

Sly Saint · Feb 11, 2019

Suffolkres said: ↑

Have you software to do this?
Click to expand...

no. I downloaded some free transcribing software and tried it using the Microsoft Voice recognition software and it comes out as gibberish. So, I have to do it the old-fashioned way, listen and type.
very time/energy consuming; hence no promises.

Suffolkres · Feb 11, 2019

I used Google translate to send letter to my Polish friend, She is still laughing at it!

Gary Burgess · Feb 18, 2019

Morning all. Episode four of The ME Show is out today.

I speak to Dr Nigel Speight, a GP who fights the corner of families caught up in agregious child protection cases. Their child has ME. The authorities actually claim they’re being abused or neglected by their parents.

Search for ‘The ME Show’ in iTunes (and please subscribe) or stream online at www.meassociation.org.uk/themeshow

Trish · Feb 18, 2019

A very good interview as always, but such a sad and depressing episode, with Dr Speight still seeing so many cases of children and families subject to child care proceedings, so many doctors believing ME is psychological and so many patients, adults and children, with severe ME getting no medical care at all.

Peter · Feb 18, 2019

Quiet a dark episode with N. Speight, describing cases of children, the snakes and ladders. One step ahead and two back. That is exactly how it is experienced. Some things are moving in the right direction, but facing extreme resistance. More progress, more resistance in way of actually gain knowledge and spend money wisely.

Nice, Gary. Appreciate the time of 15-20 min.

Kalliope · Feb 18, 2019

A dark episode in medical history, according to dr. Speight. So true.
Thanks for yet another very interesting episode, @Gary Burgess
I really enjoy your podcast!

Sly Saint · Feb 19, 2019

I've done a transcript (a couple of bits I couldn't make out)

The ME Show

Series 2 episode 4

Dr Nigel Speight

GB: This time I talk to Dr Nigel Speight, a paediatrician whose interest in ME has only grown since a patient came through his doors in the 1980’s.

Today he spends much of his time fighting the corner of families accused of neglecting their own children, when in fact those children have ME. A heartbreaking and scandalous state of affairs.

As you will hear Nigel is somewhat gloomy about where things are at with ME at the moment. It’s an interview where the connection is a bit patchy in places, but I think you will agree what Dr Speight has to say is well worth a listen.

Dr Nigel Speight welcome to the ME show. Thank-you very much for joining us on the program.

NS: Pleasure.

GB: For those who don’t know about you and your background and your connection with ME, your medical career started with paediatrics. Do you want to just take us back to that time and how you became aware of ME.

NS: Yes well, as most doctors I was never taught anything about ME at medical school, or in earlier post graduate years. I was an adult physician for eight years before I changed to paediatrics.

Then I trained in paediatrics in Newcastle and I became a consultant in Durham in 1982, and I’d still never been taught or heard anything about ME. And then three or four years into my consultant career, I met a girl in a wheelchair who informed me she had ME. I learnt from some of the great paediatric doctors like the late Alan Franklin the late David Luke (?) of Aberystwith, and the American doctor David Bell, and I gradually began to recognise the pattern. The word got around that I believed in it and therefore I was asked for second opinions in the region. And I think there must have been a cluster in North Durham in the 80’s. And then the rest of my career, because I got associated with various ME charities, and increasingly being asked to give second opinions around the country on severe cases and controversial cases.

GB: we’ll come on to talk about that in just a few minutes time. I just wonder in those early stages, as somebody who is qualified and practising in medicine, to then have a patient arrive on your doorstep, and you realise you have so little understanding at that point, what is that like for somebody in your position?

NS: Well, it’s surprisingly common I think. Medicine is a ? field ; one still gets things you’ve never seen before or even heard of. But ME is a peculiarly poorly taught condition, it’s a sort of unofficial orphan condition but in general doctors should be ready to admit their ignorance and willingness to learn throughout their careers.

GB: and where do you think we are at now? Everyone I speak to tells me that tremendous progress is being made in terms of the amount of research, the levels of reporting, of awareness of understanding, at political level at general public level, yet we still haven’t had ‘the breakthrough’. Whatever ‘the breakthrough’ might be.

NS: I am rather pessimistic at the moment I’m afraid. That’s partly because of the kind of cases that I see, so I’m looking at the whole picture through one end of the binoculars, and I tend to see where things are going wrong and in general I thought the political battle for recognition was won twenty years ago with the Chief Medical Officers report, which I was a member of. But the Psychiatric lobby keep coming back in different guises and its like a game of snakes and ladders, you think you’ve won one week and the next week they come back with another approach. I just saw a poll recently people in general medicine, registrars training to be physicians, 80% believe it’s a psychosomatic disease.

GB: so there is still a massive job to be done. I keep holding on to this hope that there’s a whole new generation coming through who get it. You’re saying actually the evidence is not there for that.

NS: not in the medical profession. It’s still not taught as an undergraduate subject. It’s not taught properly as a post-graduate subject. The major medical text books, the adult medical text books are by psychiatrists and they seem to have just cornered the market in terms of getting money for services and also research and also education.

GB: and given we’re now into the second year of this hopefully only, I say only in quote marks, only three year process of the NICE guidelines review, do you have a fear the psychological lobby will unduly affect that review?

NS: Again its snakes and ladders. When we heard there was going to be a review we were very pleased and optimistic. We were told it was especially because of the doubt cast on the research behind graded exercise and cognitive behavioural therapy. And we woke up to find that the majority of the NICE guidelines committee seemed to be proponents of that lobby.

GB: take me back to what you were saying earlier in this conversation about how you had that patient come through your door and then word spread over time of your interest and understanding within the region, that people were turning to you. Over the years you have been fighting the corner for some very severely ill patients. And the children who effectively were at risk of or were actually being abused by a disbelieving system.

NS: Yes, I mean, I’m planning to write a book on it at the moment because it’s a black period of British medical history. The two issues is the neglect of the severely affected by the medical profession. Despite being a paediatrician I’m a medical advisor for the 25% Group, which is a small charity devoted to the 25% most severely affected. And I’m often giving advice to people confined to bed at home and haven’t seen a doctor for five years because the GP refuses to do home visits and they just don’t exist. People just don’t accept the reality.

Then the other issue that happens to children is that, even more distressing I have been involved in some tragic cases where [parents] are quote ‘innocently’ accused of faking their children’s illness, and its usually simply because the so-called paediatrician hasn’t either the knowledge or the confidence to diagnose ME. And it’s vital to have an official diagnosis to protect a child from a kind of inexorable drift towards child protection proceedings. And if a child is not protected and is missing school, and the education and social services come in with their child abuse hat on and start irritating the parents, the parents protest. And I’ve got in the last 15 years I’ve had 50 clear cases where families like this, often single mothers, and when we talk about things getting better or getting worse, I’m afraid on this front they are getting worse. Because there is a growing school of thought in British paediatrics which is, which is postulating that ME cases aren’t really ME but are Fabricated Induced Illness.

GB: what’s going on here? Is this one or two vocal or very influential people spreading their bad medicine amongst the paediatric world? Is this ignorance among local authorities and education professionals rather than health professionals? Why is this still happening? Or indeed getting worse based on what you’re saying?

NS: Yeah, it’s a bit of both. The ? is a dire mixture of both ignorance and lack of understanding about ME and disbelief and the promotion of the kind of empire building behind Fabricated and Induced Illness is because there is some influential leaders amongst that school of thought.

GB: and the sadness on top of all of this is that the very people who would want to protest this situation they find themselves in, are the very people who are just not physically able to fight their own corner.

NS: Absolutely right. In many of the unfortunate families I have seen, one or other of the parents also has ME and they are already at their limits without the strain of this. What really saddens me is that so many paediatricians and social workers can’t recognise a normal family with an ill child, and they have to construct this explanation.

GB: and is this pressure on their part, we hear of so many overworked, understaffed, target-driven social services officers, are they just desperate to almost sort of reach the punchline of their story and then move on, and this makes it straightforward for them? Bad parents abusing child, job done move on.

NS: It’s almost the other way around. Here you are putting all this time and effort and resources into case conferences and reports and visits and even going to court, very expensive, and you are wasting these resources on an innocent family and you can’t recognise it. They somehow get a kick out of having a soft target, so sometimes I think it’s a kind of soft option.

GB: Will there, I mean you’ve been fairly gloomy, will there do you think in reasonable amount of time be a period when we will look back on this and it will be universally acknowledged as the scandal that it is? Or do you fear this continuing for quite a while?

NS: I wish, I’ve been waiting for that day for twenty years, I thought it was resolved after the CMOs report. But, the enormous investment that psychiatry has put in this subject it’s never shown any sign of going away easily or admitting they were wrong. And the medical profession certainly hasn’t got its house in order for this condition as yet. Politicians are, the MPs that are often very supportive, very helpful and help to rescue the families that are under this sort of pressure. But medically it’s still really a black period of medical history.

GB: what’s your best advice, lets do a number of these, first of all to GPs I guess primary health care, they are on the front line, what is your advice to a GP who is no expert in this but has a patient present with something that might be ME . What do you tell that person?

NS: What I do say is that actually things are remarkably simple. You could teach a GP or a ten year old boy scout to make a diagnosis of ME in a ten minute lesson. Just explaining to them the symptoms, that you learn to ask the right questions but a diagnosis can be quite easy. The next thing you have to go onto is to say accept the reality of the condition, validate the patient, tell them you believe them and then offer to help and try to get over your guilt about not having a cure. And once you do that the patients will love you. They can forgive you for not having a cure, but there is an enormous amount you can do to support and help them, and sympathise with them and make special allowances and visit them at home when they are too ill to come and see you. Some families get tremendous support from individual broad-shouldered GPs who accept them in this way.

GB: the power of that is incredible and I know from my own experience, the need to be believed was so important to me even though I knew there was no magic wand to be waved, validation is a huge part of that process. That was based on a question about what GPs can do. What about somebody with what they think maybe ME and they go to their GP, of course they don’t know in advance whether their GP is an expert in this or not. What’s your best advice to that person at that stage?

NS: I think it depends on their previous relationship with their GP. The trouble is there is so little continuity in practices these days. But if you’ve got a friendly family GP who’s known you from childhood then you can just go and say I think I’ve got ME what do you think?

GB: let’s look forward to wrap up this conversation. You said earlier you’re not hugely optimistic for where things are going but if there is one thing that could and should change that would make a difference at whatever level whether that’s medical or political or patient level. If there’s one thing that could happen what would that be that you think would make a difference?

NS: If one had a kind of fairy godmother wish it would be that we find a cure quickly, and once we find a cure, a medical cure, then the psychiatrists would just wither away and say this is what we always said it was anyway, a physical illness and we were only trying to help. You’ve no idea how quickly the whole controversy would disappear. And it’s like with AIDS, when there wasn’t a cure for AIDS. It was a stigmatised condition. People didn’t want to think about it. They’d think twice before they’d even test for it. And then now we got a cure, people opened up about it. Doctors say would you like a test for AIDs OK fine we’ll do that.

GB: I just hope that comes soon. Dr Nigel Speight thank-you so much for joining us on the ME show today.
Click to expand...

@Gary Burgess @Russell Fleming

ukxmrv · Feb 18, 2019

Thank you @Gary Burgess

For your best interview yet

It's easy for people to get caught up in the excitement of the new developments and things like the NICE Guideline review and forget that we are still very much in the bleak, dark time of this disease.

Dr Speight says he thought things would change with the CMO report and he's been waiting 20 years. He also talks about how things appear to change and then the Psych lobby rears up again to fight some more.

I've had ME for over 30 years and here I am, still stuck at home and my life in tatters.

It's not "gloomy" to admit how bad things are for us especially the long term survivors and the very vulnerable like children.

Trish · Feb 25, 2019

Gary asked me to post this today, as he's away on holiday. The next episode is available:

Episode Five - Mon 25 February
Gary Burgess speaks to Sue Pemberton, an occupational therapist who runs the Yorkshire Fatigue Clinic. She has a deep understanding of ME through many years of working with people from mild to moderate through to severe forms of the illness.

The link is www.meassociation.org.uk/themeshow

or in iTunes at https://itunes.apple.com/gb/podcast/the-me-show/id1374903449?mt=2

JaneL · Feb 25, 2019

Thank you @Gary Burgess for your excellent podcasts! I’ve been enjoying catching up on all episodes of The ME Show from both series 1 and 2. As others have said, you have a fantastic interview style and you’ve had lots of fascinating guests on the show.

I suspect that your latest podcast (episode 5 with Sue Pemberton) might spark a bit debate and may be your most controversial interview yet. I’m sorry that I’m too sick right now to explain further but I hope my comment will encourage others to listen and provide their feedback.

Thank you again Gary for the show and keep up the great work!

Russell Fleming · Feb 25, 2019

Next week sees Dr Sarah Myhill, and then we have the Countess of Mar, followed by Dr Nina Muirhead...

Trish · Feb 25, 2019

I've just listened to the Sue Pemberton interview. A few notes for those unable to listen.

Sue is an OT who runs a private clinic in Yorkshire with a part time GP and another OT. She is commissioned by the local NHS to see ME patients.
Her model of ME is that it's a biological illness or group of illnesses and her 'treatment' is about management by stabilising using restorative rest (mind and body resting) and keeping activity low, so not pushing to do more on good days.

She rejects the deconditioning / GET approach and the exercise avoidance / CBT approaches.

She uses CBT to help with overcoming guilt about what the patients 'should' be doing, and help people give themselves permission to rest and not keep doing 'just a bit more' on good days. Focus on stabilising, which for most people means doing less.

Also symptomatic treatment for sleep, digestion, orthostatic intolerance etc.

She sees patients over months rather than weeks, with time to recover between sessions and to implement changes. She sees severe patients at home and the main thing there is support.

She recognises her 'treatment' is about management, but some patients do 'recover' sufficiently to return to full time work but still need to be careful, others it's more about stabilising and improving quality of life.

Her description sounded very like pacing plus symptomatic treatment. She mentioned a couple of times increasing activity, but only in the context of when stabilised and when ready.

JaneL · Feb 25, 2019

The private clinic that Sue Pemberton works at is called the Yorkshire Fatigue Clinic. The clinic uses GET and CBT as treatments for ME/CFS. From their Commissioner Information Sheet linked on their website under the heading “What treatment is available at the Yorkshire Fatigue Clinic?”

The Yorkshire Fatigue Clinic uses treatment approaches recommended by the NICE Guidelines, including a collaborative approach to care, grading activity and cognitive behavioural interventions.
Click to expand...

Their information leaflet for patients says that they are a clinical assessment and rehabilitation service for people experiencing persistent fatigue. It explains that they specialise in ME/CFS but that they also see people with fatigue related to other medical disorders.

The “rehabilitation programme” they use is called The STEP Programme. This is what they say about it on their website:

The STEP Programme focuses on helping you to understand the things that can affect your symptoms. It then takes you through stages of stabilising and gradually increasing energy and activity levels. A qualified therapist will assess your needs and how you can use the programme to optimise your recovery.
Click to expand...

My bold.

http://www.yorkshirefatigueclinic.co.uk/

Trish · Feb 25, 2019

Thanks @Snowflake, I did notice she used the word 'rehabilitation' a couple of times, which worried me, and that she talked about increasing activity, but made it clear that not everyone can do this - and that they take non-ME patients with fatigue as well, and tailor treatment to the individual. I suspect it's not perfect, but it did sound a lot better than PACE style 'treatment'.

It would be interesting to hear from anyone here who has been to the clinic. I wonder whether they put GET/CBT in their description in order to comply with NICE and therefore get an NHS contract.

Barry · Feb 25, 2019

Russell Fleming said: ↑

Next week sees Dr Sarah Myhill, and then we have the Countess of Mar, followed by Dr Nina Muirhead...
Click to expand...

Wow ...

JaneL · Feb 26, 2019

Trish said: ↑

I suspect it's not perfect, but it did sound a lot better than PACE style 'treatment'.
Click to expand...

Yes I agree Trish. But however carefully they are applied, graded activity and cbt still have no reliable evidence base as treatments for ME/CFS. So is it right to be endorsing their use in any form? The risk is that we send the wrong message and end up with new NICE guidelines that are no better than the current guidelines. I think we need to take a hard line on this...

Trish · Feb 26, 2019

I agree we need to take a hard line on what goes in the NICE guidelines, and there is no place for CBT of any sort, or programs that involve increasing activity in the ME guideline. There is no evidence that they are effective. As I said, the interview and information about the Yorkshire clinic is not perfect - just a whole lot better than the usual.

Amw66 · Feb 26, 2019

Some parents have accessed this service and reports re Sue are good.
Everything is relative of course, but there seemed to be a focus in rest and operating within limits. Symptomatic treatment also helped those who perhaps had less sympathetic GPs.

feeb · Feb 26, 2019

Sly Saint said: ↑

I've done a transcript (a couple of bits I couldn't make out)
Click to expand...

@Sly Saint I just want to say that I really, really appreciate all the transcripts you do. I'm deaf and as you can imagine, that makes podcasts and videos without captions impossible for me to access. I often see your name associated with transcripts and I'm so grateful for the work you put in, which must take a lot out of you.

You may already know this, but if not, you might be interested to hear that Youtube can provide transcripts for videos. If you upload a video and generate automatic captions (correcting for errors, if necessary), then publish the video, you can get access to the transcript from there. It lives in the "..." menu, next to the like/dislike thumbs on a video page. It works even if you publish the video privately, I believe.

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