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Radio interview with Martine MacCutcheon and Colin Barton 21st August 2017

Countrygirl

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http://www.bbc.co.uk/programmes/p05btwpy

Starting at about 1.38.

Interview with Martine MacCutcheon and Colin Barton of the Sussex ME Society, and supporter of Esther Crawley who is their medical advisor.

This is a link to a transcript of the interview.

http://www.meassociation.org.uk/201...-from-sussex-kent-m-e-society-25-august-2017/

Danny: You mentioned earlier the illness you had been through, and I wonder whether your fame – your profile – makes it more difficult to cope with, you probably just want to shut yourself away but people still expect things of you. How difficult was it going through your M.E. with your profile?



Martine: ‘Yeah, it was a lesson I really needed to learn, and an obstacle I had to overcome. I had to start by realising I couldn’t always put on a brave face, I couldn’t always be what the public wanted me to be. And sometimes it was OK to be in the petrol garage or on the street, not feeling one hundred per cent, and not giving everybody what they wanted. It was a valuable lesson and I think that nothing else could have stopped me really – I don’t think anything else would have made me take stock and just enjoy the simple things in life, and ‘smell the roses’.



Martine: ‘I had to have quite a harsh lesson I think to come at life from a healthier angle, because I was ‘all-or-nothing’, I was constantly in ‘fight-or-flight-mode’, I was constantly running on adrenaline; and it’s no way to live long-term. That’s why people burn-out. And a lot of people with M.E., a lot of them are sport’s stars or big politicians – people that constantly push, push, push. And I think, in a way, being in the public-eye, it was a bigger bump when I fell – don’t get me wrong – and it was a more difficult journey for me to get better, but I think it actually gave me the lesson I really, really needed. Which is that what I think – my opinion of me – must come first.



1.43.24

Danny: That’s Martine McCutcheon speaking to me earlier. Congratulations to her by the way, top 20 for her new album ‘Lost and Found’, when the charts came out on Friday. But what exactly is M.E.? And perhaps it is quite misunderstood by those of us that don’t have it. In the studio now is Colin Barton who is chairman of the Sussex and Kent M.E. Society and lives with the condition.

What is M.E.?

Danny: What is M.E.?

Colin: Well, M.E. is a neurological condition that can come on sometimes after a viral infection or a trauma, and this would manifest itself in physical and mental debility, and any type of stress would affect it as well and so people can’t sort of function physically or mentally for any useful period of time. With some people it’s quite severe – with a few it can lead to being bedbound for a long time.



Danny: Martine was suggesting at the end there that people who were functioning at quite a high level in terms of sport’s stars and people with a high profile – would it disproportionately affect them or can it hit anybody?



Colin: Well it can hit anybody, definitely. It’s likely to show up more with people who are particularly active and professional and such-like and high-achievers – it obviously shows up more then with more active people; but in actual fact it does affect people of all types.



Danny: And how long have you been living with M.E.?

Colin: I have been living with M.E. for over thirty years now, because it did take a long time to diagnose and it was in the dark old days when it wasn’t recognised as easily.

How does it affect you and what of those who don’t understand it?

Danny: And how does it affect you?

Colin: Well affects as far as physically and mentally, I can’t function for any useful period of time and I also have to avoid stress and such-like. So, you have aches and pains, and stomach problems as well can come into it, and also eyesight difficulty.

Danny: So has it affected all areas of your life would you say?


And the obligatory mention of the..........................

Lightning Process…

Danny: I am always wary about passing on tips and tricks, from others, but an emailer from Worthing, Denise, said earlier in her note that her daughter had M.E. from the time she was eleven, eventually had something called ‘The Lightning Process’.
 

Countrygirl

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http://measussex.org.uk/

Below is a 'flavour' of the Sussex ME Society.

It presents a call for more Clinics, supports GET, and fails to warn of its dangers.

They are clearly a prop of the BPS proponents and, of course, have EC as a medical advisor.



SELF HELP APPROACH TO GRADED EXERCISE MAY HELP CHRONIC FATIGUE SYNDROME – JUNE
By admin On 24th June 2017

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BMJ research News 23/6. Using a self help approach to graded exercise in combination with specialist medical care reduced fatigue and improved physical function in patients with chronic fatigue syndrome, a randomised trial has shown.

http://sci-hub.cc/10.1136/bmj.j3057


Although NICE guidelines and the PACE trial remain contentious amongst some patient groups there is absolutely no doubt in my mind that the current approaches of cognitive behavior therapy (CBT) and Graded Exercise Therapy have helped and continue to help a large number of people to recover from the condition. This is based on my own personal experience, trial evidence (PACE and others), anecdotal experience from colleagues and patients and data from the National Outcomes Database (NOD).

Many of the websites give (in my view) an unrealistically gloomy picture of the outcome for CFS/ME. It is likely that those who still suffer from the condition may contribute more vociferously to the websites whereas those who have recovered may prefer to move on. Apart from the NOD there is little scientific data on which to prognosticate so my views are based largely on anecdotal experience gathered over a 30 year career of involvement with this condition. However, they are largely in accord with the NOD data.

In my view the simplest way to think about prognosis is in “thirds”. Using best available therapy (CBT/GET delivered by trained and experienced therapists), approximately a third of patients will make a full recovery and return to their pre morbid activity, about a third will improve but not recover fully and about a third will stay the same (and a small number may deteriorate).

There are various markers of a good prognosis:

  • Having a relatively acute onset with a a specific pre-disposing illness
  • Not having any ongoing specific aggravating factors such as disputes at work, relationship issues, litigation, etc.
  • Having an open mind about the causes and disease mechanisms
  • Early engagement with a good therapist
Conversely, the markers of a poor prognosis are:

  • Having a slow onset over a number of months with no obvious precipitating illness
  • Having ongoing perpetuating factors (as above)
  • Constantly looking for an alternative biomedical explanation for symptoms
  • Using alternative, unproved and often expensive approaches to therapy
ME IMPROVEMENTS – JULY
By admin On 16th July 2017

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The Sussex & Kent ME/CFS Society has welcomed research just published that shows up to one third of adults affected by the illness who attend specialist NHS services report substantial improvement in their health.

There are around 50 NHS specialist chronic fatigue syndrome (ME/CFS) services in England, including the Haywards Heath and Maidstone Centres, that treat approximately 8000 adult patients each year.

Over 1,000 research subjects were questioned about fatigue, physical function, general function, mood, pain and sleep problems before and after attending 11 of the English services.
CALLS FOR MORE SERVICES FOR PATIENTS WITH ME – APRIL
By admin On 24th April 2017

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Sussex Argus 22/4 – A support group is backing calls for investment in specialist services for people affected by ME. Brighton Pavilion MP Caroline Lucas has written to department of Health ministers and the national Institute for Health and clinical Excellence (NICE) pressing for more support for patients. Ms Lucas is patron of the Sussex & Kent ME Society, which helps people with the condition across the counties. There are a number of specialist NHS centres across Britain including in Haywards Heath, which are staffed by doctors, physiotherapists, psychologists and occupational therapists. The Haywards Heath service deals with around 480 new referrals a year. It has seen almost 5,000 patients since it was established in 2005. The society says there is a need for further funding to expand these vital services. Society chairman Colin Barton said: “There is no doubt that treatment is best delivered within the context of specialist services. “We appreciate the NHS is under financial constraint. However specialist services for ME benefit a large number of patients in a young economically active age group and therefore should protected and expanded.”
 

neweimear

Senior Member
Messages
215
Martine did us no favours. She is a lovely lady but she had bloody burnout!!! I live in Ireland and there is a house across from me that is used as a holiday home by people who live in the U.K. They know I am ill and pretty much housebound. They recently asked my mum how I was doing and the consensus was Martine McCutcheon had that, your daughter will be fine. We have been fundraising for OMF and my daughter went over to their house today looking for donations. These people are wealthy. They threw a few coins into our container!!! So insulting. Thankfully, all other neighbours have been generous. So frustrating when people dont get how debilitating this illness is. My point is Martine trivialised our illness and that has a knock on effect.
 
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ME is the same as burnout
see also this thread
http://forums.phoenixrising.me/inde...ine-mccutcheon-mentions-me.51927/#post-893194

"Now fully back in work mode as she launches a new album Lost And Found, Martine is managing both ME and Lyme disease. “It’s easy when you’re on crazy schedules for things to flare up, but you just have to manage it the best you can. I do that with exercise, diet and pacing myself,” she adds."
http://www.express.co.uk/life-style...-McCutcheon-illness-bankruptcy-Lost-And-Found

"
THE EastEnders and Loose Women star has been plagued by health problems over the years. She credits her new-found health with a daily dose of fresh air and exercise."
"The popular Loose Women panellist has opened up in recent months about her long battles with depression, ME and Lyme disease."
http://www.express.co.uk/life-style...ally-depression-EastEnders-Loose-Women-health
 
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And she probably has no idea. Not that that makes any difference. For PwME in the UK especially (but not only) it just is salt in the wound.
I guess that people, in the UK especially perhaps, genuinely get misled into thinking they have ME, when in fact they have simply run themselves into the ground. The CF versus CFS versus ME conflation confuses this further; and the people happy to perpetuate this confusion make it vastly worse. You then end up with reports of people with ME apparently responding favourably to treatment, and the patient genuinely (but misguidedly) saying how wonderful it all is. Not surprising that most normal mortals get taken in by it all.
 
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2,125
Colin Barton went through a period of commenting on the MEA's Facebook post, trying to push the BPS agenda
Interesting post on prohealth forum from 2004
Report on Kent (UK) M.E Medical Conference

"In attendance were Chris Clarke - CEO of Action for ME (AfME), Professor
Leslie Findley - Consultant Neurologist at Romford (Essex) ME/CFS Clinic,
Mary Jane Willows - CEO of the Association of Young people with ME (AYME) &

Dr Mario Verga - Psychologist who attended on behalf of the Kent & Medway
PCT Steering Group for the new specialist NHS ME/CFS services. Although she
wasn't introduced, I'm led to believe there was another member of the
steering group present & have since been informed she wasn't a clinician.
Colin Barton and Joe Marsh from the Sussex & Kent ME Society were also
present."

"
Recalling a conversation with Professor Simon Wessely - which occurred
during a medico-legal case they were sitting on - Professor Findley
recollected how they were unable to reach an agreement. He stated how
Wessely then verbally observed that the reason for their differences was
because they were each seeing a different spectrum of patients
- i.e Wessely
's patients had different symptoms to those of Findleys. He (Findley)
refused to elaborate on this point to the audience other than to say the
common initiating factor in patients he saw was infection, insinuating that
the patients Wessely saw didn't suffer this initial infection.

"

During the break I noticed that the Sussex/Kent Society had books from their
library on display. These included titles from Michael Sharpe, Trudie
Chalder
& Frankie Campling."

"
What about the severely affected? Would there be domiciliary visits for
those who were unable to leave their homes? Dr Vergara appeared to be
totally unprepared for these questions, answering only with 'maybe',
'possibly', 'hopefully', 'umm' and 'er'."

"
A member of the audience then stood up and asked if all the clinics were to
be headed by psychologists. She was told to sit down by Colin Barton....
....
Dr Vergara eventually stated that psychologists would
head all the clinics."

"

Despite highlighting AfME's report on the severely affected he appeared to
pay nothing more than lip service to this particular group. Clark later
admitted they had nothing to offer these patients. It appears their plight
is at the bottom of the agenda of both charities and the NHS alike."

Writers observation:
"
I found Professor Findley's talk confusing. If he and Wessely are talking
about two different disorders why do AfME continue to collaborate with
Professor Wessely? Someone later remarked to me that they thought Professor
Findley was two faced. I'd agree."
"
Barton and Marsh silenced those who had contentious queries."

"
What I witnessed at this event & following the receipt of information
received following it, I have to conclude that the Sussex/Kent Society does
not represent those with M.E
(as opposed to those with a primary diagnosis
of depression, chronic fatigue etc). Worse still, they may be seriously
misleading and misinforming certain individuals and other interested
organisations about this subject
- much to the misfortune of those who
desperately need and deserve better representation and treatment for their
illness."

A sad reminder of how £8.5million allocated to ME Services were mis-used thanks to AfME and others.

full post here: http://forums.prohealth.com/forums/...ort-on-kent-uk-m-e-medical-conference.109405/


 
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Is there a medical recognition of the notion of "burnout", and if so provide a link or two please. If there isn't, that maybe give me some pointers.

I'm guessing the burnout situation is where someone has run themselves down both physically and mentally, due to a excessive activity with insufficient rest or sleep, with severely depleted energy levels. The key differentiator I imagine, is that their underlying biology is still intact, and can still process energy correctly once the abusive activity pattern ceases, and they do the right things to reverse the situation.

If you have ME (no matter what its etiology), then the above recovery can never work, because the biological energy-processing systems are themselves damaged in some way, and may well be further damaged; GET itself potentially an additional abusive activity.

I can believe that if what you are really suffering from is burnout, then you could still end up in a latched condition, but a very different one to that of an ME sufferer. With burnout, you may be stuck in a weakened physical and mental state, needing to really push yourself to get your body to reestablish itself - processing energy as per normal biology in order to achieve this. Some people may well need help to get themselves through this.

But if you have ME, though the scenario may well seem incredibly similar to the above, the vital difference will be the PwME's biological inability to process energy properly; forcing it to try when it is biologically incapable is when disaster can strike. Treating two different illnesses the same, just because they present with very similar symptoms, is one of the well known hazards of medicine. This is why patients are told to never share medicines just because they think they have the same condition. The advice of course normally is: go and see your doctor! In this case, in the current climate, it seems to be avoid at all costs.

This is where really good case definitions are so vital. An interesting trial might be one that attempted to distinguish unequivocally between burnout and ME - I imagine PEM would be a clearly distinguishing symptom. I strongly suspect PEM is the symptom of a damaged energy-processing biology, and should therefore be a key differentiator (maybe the only significant differentiator?) between burnout and ME.

Observing my wife with her ME, the rate at which she can convert energy seems to be severely reduced, and so as each small energy reserve is depleted, it is not replenished anything like as fast as a healthy energy-processing biology would do. And if all my wife suffered from was burnout, she would have been up and running again (literally) many years ago, soon after she went down with her ME, because she pushes herself more than enough. In fact I suspect that when PwME pace themselves, the mental and physical challenges they are overcoming to achieve that, are way more than needed to recover from simple burnout.
 
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I think the key is around the type of recovery and what happens when you exercise. However it also has to do with what happens when you rest and get more refreshed sleep. If you eventually slowly climb your way out then you probably have something other than CFS/ME. If you get good sleep and reduce activity and when you start trying to climb out, exercise intolerance puts you back to square one then you probably have CFS/ME.

One would then conclude that if you have CFS/ME the chances of recovery are zero. However by all accounts there are periods of remission, which means that people can appear recovered or stable and lead a relatively normal life for a period of time.

If you have a relatively short period of symptoms and then go into remission quite quickly (say within a year), it could appear that you are cured but really you are kidding yourself and hoping that the inevitable relapse will never happen?

I guess what a remission feels like is mainly to do with how much of your former life you recover?

I'm not sure what has happened to Martine McCutchen but one thing is for sure, listening to her various accounts, she doesn't seem to know either. She certainly seems to have been through the media circus and not come out of it particularly well. Perhaps she has mild ME and is in remission but can't articulate what is going on, or perhaps she has something else?

I dislike the term "burn out" since it has the same derogatory and discriminatory tone as "yuppie flu", (I find it especially distasteful when used on sites like PR..... two wrongs don't make a right and all that).

I prefer adrenal fatigue or something more sympathetic to the patient who after all is only a victim of the random healthcare system like we all are. I would not like to judge whether MM has adrenal fatigue, depression or anything else with what little information there is available.
 
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@arewenearlythereyet: this is why I asked for a more medically correct terminology for what many well respected members of PR speak of as burn out. And I'm not so sure it is derogatory? Sounds like a pretty valid analogy to me - just not for ME. But in fairness I'm not in a position to know if some people say it in a derogatory manner. I used it because I don't know what a better terminology is. I would only want to use an alternative name if there were some consensus, not merely opinion.
 
@arewenearlythereyet: this is why I asked for a more medically correct terminology for what many well respected members of PR speak of as burn out. And I'm not so sure it is derogatory? Sounds like a pretty valid analogy to me - just not for ME. But in fairness I'm not in a position to know if some people say it in a derogatory manner. I used it because I don't know what a better terminology is. I would only want to use an alternative name if there were some consensus, not merely opinion.
I agree that describing someone as suffering from burnout doesn't necessarily mean that it's being used in a derogatory way, it will all depend on the context.

As a completely random example, Medscape has this article, http://www.medscape.com/viewarticle/883134, that talks seriously about physician burnout, so hardly being used as a derogatory term.
 
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I've always thought of burnout as being a problem for high level athletes. Same really as over training syndrome?
I guess it's another one of those very ill defined terms. On reflection, when people I know have used burnout in relation to design engineers I don't think it is the same thing at all ... More about losing creative ability and motivation. Retract my earlier statement!