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

feeb said:
Youtube can provide transcripts for videos
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I'm glad you find them useful (my Mum always used to say "it's good to feel useful":))

yes I've looked at the Youtube generated ones but unfortunately they often result in gobbledegook, or at least very inaccurate transcripts and figured by the time I'd gone through and made all the adjustments and reformatting etc I might as well have just done it from scratch.

If there are any other podcasts or videos that you or anyone else would particularly like transcripts for I will do my best.
Maybe I should set up a thread for this? That way if people know of existing transcripts they could also be added?

eta: new thread here
https://www.s4me.info/threads/transcripts-of-podcasts-and-videos.8360/
 
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Trish said:
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.
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I am reserving judgement until I know more but the clinic has endorsements from AfME and AYME
"
"Sue has 22 years of specialised knowledge and expertise in CFS/ME. Her experience, practical and excellent advice has turned young people lives around.
"Our members have told us that after years of struggling, Sue has been their ‘lifeline’.
"We’re thankful that her skills will not be lost and that patients will now have choice in how they receive their treatment."
Mary-Jane Willows, CEO of the Association of Young People with ME, AYME".

The book Sue Pemberton wrote; Fighting Fatigue Managing the Symptoms CFS

"Amazon product ASIN 1905140282"

has anyone read it?

I've only been able to read the 'sample' and am curious as to how this bit goes:

Page six " How to increase your energy supply: Managing your activity also involves looking at ways to generate energy by recharging your battery as well as thinking about how you spend your energy"


eta:
"As the Chief Executive of Action of the UK’s leading M.E. charity for over five years, I have not come across anyone in the UK who is in the same league as Sue Pemberton as an Occupational Therapist for people with M.E. and similar chronic conditions. The outcomes she achieves for her patients are truly remarkable as was reflected in the excellent results her NHS clinic achieved in audits.
"Sue provides wonderful support to those able and willing to return to work but who need to understand the crucial principles that will maximise the probability of success.
"She is a great communicator and is held in very high regard by the HR and OH specialists in companies and other enterprises that have benefitted from her expert advice. Sue is a model of clarity in explaining how employers can best meet their legal obligations towards disabled people; including the reasonable adjustments to employment terms conditions that are appropriate and cost effective for people with M.E."
Sir Peter Spencer, Chief Executive of Action for ME (Aug 2012)
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eta: the book is recommended on the North Bristol NHS site (along with the usual TC one and one by Gabrielle Murphy)
https://www.nbt.nhs.uk/our-services...ndromeme-service/chronic-fatigue-syndromeme-3

she has published a number of papers:
https://www.researchgate.net/profile/Sue_Pemberton

list of people who have cited her work is interesting (includes Chalder, Sharpe, Crawley, even Simon Wessely) although I have not looked at the context of the citations.
I did read this one
https://www.researchgate.net/public...ir_implications_for_rehabilitation_programmes

a lot about beliefs in it and starter-finisher 'types'.
 
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Sly Saint said:
Page six " How to increase your energy supply: Managing your activity also involves looking at ways to generate energy by recharging your battery as well as thinking about how you spend your energy"
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Hmmm. That is the potential problem there. If this is tightly confined to the use of pacing, to manage what little energy a pwME has available to them, if that is made clear, then OK. But if it is in any way suggesting that energy availability can be increased progressively over time, then that would make a lot of old bullocks.
 
this is on the Sussex and Kent ME/CFS Societys website:
British Association for CFS/ME (BACME) – Sue Pemberton
I would like to congratulate the Sussex and Kent ME/CFS Society on its work over the past few years. For those of us who have been clinicians in the field of CFS/ME over that time we understand the challenges that this has presented. Despite the fact that scientific knowledge around the condition has only been slowly emerging over that time, the need for people to find support and a reliable source of information has always been vital. The work done by groups, such as Sussex and Kent, is a valuable lifeline for the many people who feel alone in the wilderness. They have worked collaboratively with the NHS and other organisations to find ways to help people and to provide them with a voice. I wish them the best for the future.
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eta: see also
2007 guidelines devpt
"
Hazel O’Dowd and Sue Pemberton for their work on the behaviour section"
https://www.google.com/url?sa=t&rct...df-196524109&usg=AOvVaw2fhCU0q86JNSoOavFIxzeE

https://measussex.org.uk/about-us/30-years-plus/
 
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To use a phrase often used in psychosocial explanations, it has become a vicious circle.

Bad advice and incorrect treatment in primary care leads to bad advice and incorrect treatment in 'specialist care' (ie PACE style CBT/GET on NHS) leads to lack of improvement or worsening of condition, leads to increased need for more help and support.

This is then a long term problem to try and undo the damage done. Long term 'Rehabilitation' in private clinics using basically the same therapies but with more 'care' are still only a means to 'help' live with the condition but at the same time they help to support and perpetuate the psychosocial model of the disease (no matter what the therapist may believe or say they believe). The same goes for the literature provided by these clinics and the charities.

What's needed is correct advice at diagnosis, help with symptoms, counselling (not CBT) about living with the condition and specialist nurses (like they have for MS patients) for ongoing help with relapses.

Changing the NICE guidelines is one major step; but then there is still MUS to contend with..........

(that's my take on it anyway)
 
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From @Gary Burgess:

Episode Six - Monday 4 March
Gary Burgess speaks to Dr Sarah Myhill, a long-time ME campaigner who runs a specialist clinic for people with ME and Chronic Fatigue Syndrome. In this episode she explains, in detail, her understanding and experience of treating people with ME and CFS, as well as her own ongoing battles with the General Medical Council. In this episode she makes allegations about the authors of the Pace trial report, and her fight to get the GMC to look again into those allegations is ongoing.

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

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

I placed this note on our website and social media (or variants thereof) with respect to the latest The ME Show with Dr Sarah Myhill:

Note re: Acumen mitochondrial test that was developed by Dr Sarah Myhill and Dr Booth:
The MEA has funded an independent research team from Oxford and Newcastle to test the validity of this commercial test. We heard from Dr Karl Morten in December 2018 that the results did not support its continued use. The study will be published early in 2019 when we can learn more.
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We also heard from Dr Morten last Friday, and he's currently looking for a suitable Journal in which to publish the study, so hopefully we won't have long to wait. Although it does seem to me like I have been waiting forever for this particular study, but the authors had problems - staff leaving and other things beyond their control - that has delayed publication.

Russell
 
Sue Pemberton has been tweeting and posting to the MEA Facebook page since the podcast

1. "Yes, also useful to look at Mark Van Ness work around PEM and inflammatory reactions, on exertion. This is why we don’t use exercise. However people still have to move so helps to understand how to do that without triggering high heart rate/supporting orthotic tolerance etc."



2. I don’t normally get involved in discussions as I think everyone has a right to express their views and if you haven’t been to see us your points are obviously very reasonable. I just want to point out to everyone the current guidelines (which I am sure will change) don’t actually tell the therapist how to use these tools.

To me ‘exercise’ means physical exertion. In ME that can be anything, e.g. brushing your teeth, a shower or moving round the house.

We look at these not by giving an ‘exercise programme’ which makes no sense as it increases PEM but ways to do these everyday muscle activities in a way that minimizes its impact - low heart rate, orthostatic controls, making it easier to do etc. Again with ‘grading’ it’s how you interpret this.

Many people on their better days do more and then get more post exertion symptoms, so it is about how to manage this in a way that minimizes this impact, maintaining more stability. If people feel a little better then controlling that process.

So for example a severe patient could only walk a few steps from her bed without relapse, when she stabilized she built up by 10% and she can now go to her bathroom and back without PEM. I hope this gives some clarification that even though I have never supported the deconditioning model these terms like GET aren’t interpreted the same way by everyone, it doesn’t have to be so black and white.

3. I actually agree with what you are saying, we see this as stabilizing and for some people they never leave this phase. The importance is the quality of rest, it has to involve switching the autonomic nervous system into the parasympathetic state and many people can’t do that. This is the focus of much of what we do, alongside supporting the HPA axis with basic functions like sleep, eating, fluid and light.

4. That is true. If you actually read the guidelines they are quite vague and do leave room for interpretation around the terms CBT and GET, so we can work within that but use a very different model for the illness. We are still working around ‘activity’ not medication or dietary interventions that it currently excludes.

5. We do a lot of work going through biological mechanisms with our patients but put simply the autonomic nervous system that controls background automatic functions in the body, like heart rate and blood pressure normally switches between two modes - sympathetic and parasympathetic.

The first is geared for action whilst the other helps us digest and restore. Many of our patients operate in a high sympathetic state so even when they become very ill they find it hard to ‘switch off’ like the brain is whirring but the body can’t do anything - sometimes described as wired but tired.

6.Our HPA axis also acts as a master body clock producing the chemistry we need to wake in a morning and go to sleep at night. There are different triggers, known as Zeitgebers, that regulate its pattern. Light is one of these. There are different ways to use light but one example is a sunrise clock that helps stimulate cortisol to help with waking on a morning.

(p.s. I have taken out the names of the people she was replying to just to make things simple plus added an extra space now and then for readability)
 
Mark Van Ness gives instructions for managing to do more using only what is available for us. We all want to be able to do more without getting payback, GET is a very specific program where you increase how much you do steadily no matter how you feel. There is no question or doubt about that. If a clinic is not doing that then they should not claim that they are. It is black and white. The fact clinics use GET is taken by outsiders like consultants for other diseases we may get, benefit providers, care providers, to mean we could do things if we tried.

If clinics and doctors are doing it differently then they are not treating their patients with GET or graded exercise and are very much at fault if they are claiming to do so. Call it something else, maybe adaptive pacing!

Consider a group claiming that paracetamol cures cancer then you get patients were cured in these clinics. When you ask for details you discover that it also involved radiation therapy. Just because some people get cure there does not mean they can claim paracetamol treats cancer (and use that to show you only die if you give up).

The success rates of "GET" are used to shore up a theory of disease that has been abandoned in these clinics and we all suffer.
 
I forget exactly who Sue Pemberton is.

Her comments sound sympathetic but I worry about bits like:
ukxmrv said:
The importance is the quality of rest, it has to involve switching the autonomic nervous system into the parasympathetic state and many people can’t do that. This is the focus of much of what we do, alongside supporting the HPA axis with basic functions like sleep, eating, fluid and light.
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What evidence base is there for this either? Why is it the focus of what she does? I am not sure what sleep or fluid has to do with 'supporting' the HPA axis.
 
Lucibee said:
I've just listened to the latest episode featuring Sarah Myhill, but I found some of the things she said to be hugely problematic. I'm scared to say anything more, because she has so many ardent fans... :unsure:
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I’m not on top of these issues as well as some of you are so I’m not the best person to comment on the latest episode with Dr Myhill. However I’m aware of the controversy! I (and I’m sure many other members) very much value your posts on this forum @Lucibee and your contribution to the scientific debate. So I’d love to hear your thoughts on this and which things Dr Myhill said to be particularly problematic. No pressure though! If you don’t feel comfortable with commenting right now, I expect someone else will! :thumbup:
 
Russell Fleming said:
We also heard from Dr Morten last Friday, and he's currently looking for a suitable Journal in which to publish the study, so hopefully we won't have long to wait. Although it does seem to me like I have been waiting forever for this particular study, but the authors had problems - staff leaving and other things beyond their control - that has delayed publication.
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Oh no!!!!! Ugggghhhhhhhh. In his December video Karl Morten stated how he had no money to continue his very promising work. Ron Davis has said how hard it is to keep a team together without long term funding - people leave after you have spent time training them and them gaining knowledge. Please, please, please, MRC fund this work so Karl Morten can build and keep a team together long term and provide a big contribution to the field.
 
Lucibee said:
I've just listened to the latest episode featuring Sarah Myhill, but I found some of the things she said to be hugely problematic. I'm scared to say anything more, because she has so many ardent fans... :unsure:
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I'd be interested to hear your views.

I have just listened to it. My problem is she is so definite and sure she has a lot of the right answers, but all her evidence is anecdotal. She hasn't done any blinded controlled trials as far as I know.

Even her way of splitting CFS and ME according to her own definitions is not one I've heard before. As I understand it, she says it's CFS if you have an energy metabolism problem, and ME if you have both an energy metabolism problem and inflammation which may come from allergy or ongoing infection. She describes CFS as basically about tiredness, though it seems to include PEM too. Whereas ME includes more malaise and flu like symptoms.

She also has her own theories about diet - paleo keto, and how to treat the underlying energy problem with diet and a lot of supplements. She didn't go into details on this. She also treats thyroid and adrenal problems. She says her treatments tend to make patients feel a lot worse first, sometimes for months, and this is about clearing toxins and herx reactions.

She claims her treatments work, though 'sometimes they take years'. But she has no clinical trial evidence to support this. How does she know, over that timescale, whether the patient would have improved anyway? Some people do, and she does emphasise the need for pacing and rest.

Her only published research was on a mitochondrial function test which she says showed good correlation between severity of symptoms and the mito test results.
 
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