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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Does anyone know if this a usually a phone in show where listeners can comment?
Surely they are in breach of the GMC guidelines which state that the duties of a doctor include:
Keep your professional knowledge and skills up to date.
The BPS doctors don't attend the major conferences (IIME or Florida) for the disease they claim expertise in and seemingly they have not conducted full literature reviews as they keep claiming not much is known (EC says "We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)." Perhaps if she attended some conferences - she'd know a bit more!)
Recognise and work within the limits of your competence.
They are not able to recognise their own limits otherwise they would not keep claiming to be experts based on their limited psychological construction of the disease which ignores the biomedical evidence.
Be honest and open and act with integrity.
These doctors have spun and twisted their results to mislead the public and the press. Their behaviour in relation to the lies they tell about "vexatious" patients is unethical and the opposite of acting with integrity.
Never discriminate unfairly against patients or colleagues.
These doctors routinely use their positions of power to promote the view in the wider media that critics of their work are either 1) mentally ill 2) vexatious 3) are motivated by stigma towards mental illness. This seems like discrimination to me.
Never abuse your patients' trust in you or the public's trust in the profession.
Given the media lies and manipulation both of trial outcomes and of the mischaracterisation of patients, I'd say they are abusing patients' trust in the profession - such that many patients won't even go to the doctors any more due to the stigmatising treatment they can expect to receive.
Don't we have a case here given that a fair bit of this behaviour is documented in the press and was highlighted in the Alem Matthees' FOI hearing.
Dr Philip Hammond:
"I trained as a GP and worked as one for 20 years before retraining as an associate specialist in the young people's specialist Chronic Fatigue/ME service at the Royal National Hospital for Rheumatic Diseases NHS Fountation trust in Bath (the Mineral Hopsital). We work as a team of doctors, psychologists, physiotherapists, occupational therapists, support staff and managers under the leadership of Dr Esther Crawley."......
Good opportunity to phone in and talk about PACE fraud which she is ignoring.
Apparently EC will be on BBC again tomorrow
You forgot the superglue and duct tape. Its not enough to pull yourself together, you need those to hold it together afterwood. Obviously.
There seems to be a major charm offensive underway here.
Time to end the damaging battle over chronic fatigue syndrome
All those interested in progress on helping those with CFS should unite in the push to find therapies, be they behavioural or biomedical, says Esther Crawley
And yet it causes misery and suffering for hundreds of thousands of people, including many children.
One in a hundred teenagers in the UK miss a day a week or more of school because of it, and 2 per cent are probably missing out on the normal stuff that teenagers do. Those I see in my clinic are sick with disabling fatigue, memory and concentration problems, and terrible pain. On average, they miss a year of school, on top of which mothers give up work and siblings suffer.
Yet progress on this illness is being hampered by controversy, with some people disputing both its cause and treatment.
Some still dismiss it as a non-illness; others decry attempts to treat it with psychological therapy.
The result is that few patients are offered treatment and there is almost no research on the condition.
This illness is more common than leukaemia and more disabling than childhood arthritis, but few specialists treat it.
How have we arrived at a position where the biggest reason for teenagers to miss school long-term is rarely studied and society allows so few to receive treatment?
Although CFS is poorly studied, we do know it is heritable and is triggered by something, usually an infection, to which children who get CFS are more genetically vulnerable
In teenagers, we know hormones are affected: for example, the natural steroid cortisol is at a low level in the morning. We also know that there are changes indicating that metabolism is different from normal. We now know that it isn’t an individual “bug” that is important in leading to CFS, but the severity of the initial illness caused by the bug.
More research needed
We need more research to understand what happens to keep people so sick, long after the initial illness has passed.
Some people say that because we haven’t worked out the biology …
… the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological.
Changing someone’s behaviour is a potent stimulus to changing their biology. For example, altering how well a teenager sleeps will change their biology, including daily cortisol patterns.
So what does the field need? We need …
… very large studies that look at the underlying biology, including genetics, to understand the different subtypes of CFS.
In the UK, the National Health Service is probably the place to do them.
While we await the results, we need better treatments for the large number of people with the condition who want to get back to school or work. We are currently recruiting patients for the largest study so far to investigate internet-delivered cognitive behavioural therapy for children and teenagers throughout the UK.
Patients are desperate for this trial …
... yet some people are still trying to stop us.
The fighting needs to end. Those of us who want to help people with CFS …
… must work together so that this important illness is not ignored any longer.
We learned the 'affirmation' and stood on the floor on paper circles with key words written on them.
Here is the big secret of what we had to say while standing on paper circles - WHEN YOU FEEL A SYMPTOM
SHOUT- STOP! (stand on the paper STOP)
SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
SAY- I CHOOSE THE LIFE I LOVE
SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE
WAY (you are being your own coach here)
ASK YOURSELF - WHAT DO I WANT?
ANSWER YOURSELF- I WANT ENERGY AND HAPPYNESS LIKE (you say something that means energy etc. to you)
ASK YOURSELF- HOW WILL I GET THIS?
TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT
EVERY NEGATIVE EMOTION
AND DOING THE LIGHTNING PROCESS.
There are a few more short affirmations and that's it you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!! These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS. The four of us all were 'high' for a few weeks or months and did indeed do more than usual but sadly all relapsed.
I certainly find it thoroughly offensive.
This BPS media blitz is taking up far too much of my time lately, but what the heck I feel like a rant so here goes:
There’s something we can agree on. Shall we start by ending the smearing, labelling and name-calling of those with different views?
Right-ho, I’ll switch of my critical faculties for the cause then.
If by “We” you are referring to yourself and your BPS buddies, thank-you for that admission. If you ever find the time to take your heads from up your arses you may find that the rest of the world has been rather busy lately. Read the IOM Report (rather than Shorter’s summary of it) or accept and invitation to a IiME conference, why don’t you?
So that’s the children, the mothers and the siblings covered. Got a problem with mentioning the fathers?
Yes, you are, please stop it. “some people” is a phrase used by old ladies in the queue at the butchers when talking about the woman behind them, as in “some people are no better than they should be” said just loud enough for the gossiped-about woman to hear, with a knowing glance thrown in for good measure.
“Decry”. Nice word.
That few patients are offered treatment and that there is almost no research on the condition is true. That this is a result of “some people” “decrying” is pure assertion on your part without any evidence, and a viewpoint recently strongly criticised by a FOI tribunal judge.
So why did you engage in a turf batte which ended with one of the few that did (Nigel Speight) being suspended by the GMC?
It’s only one of the biggest reasons for them to miss school according to your telephone survey of their parents. Great diagnostic practices from the epidemiologist of the MEGA trial. Sure I’m united in the push to find blah blah.
Please elaborate on what you know about adult ME. “Different biology” implies that the treatments will also need to be biomedical, although I am of course united in the push to make progress on behavioural treatments for biological illnesses, having turned off my critical faculties so I can’t be accused of not being a team player on this one.
We most certainly do, so kindly step aside so that scientists with expertise in infection, genetics, hormones, metabolism etc can get down to work. What was your skill-set again? Telephone surveys or something.
Sorry to interrupt again, but what is it with the use of the royal “we” throughout this article? Can you please say “they” when referring to the scientists engaged in biological research?
I look forward to your public take-down of Mr Shorter then.
We’ve got sleep hygiene covered thanks, doesn’t take a million pound study, it’s pacing 101. We know. It can be put on a web-page. In fact someone has, years ago, without charging a million quid for it:
Thanks anyway. We'll call you. Seriously.
Sorry, was that a rhetorical question? Perhaps people who have spent the last 3 decades suffering from the illness might have a view? Oh go on then, you tell us, what do we need?
Got something to sell have you?
I’m not even going to comment on that. Except to say that some countries are no better than they should be.
Oh right, you have got something to sell. Sorry, I was being sarcastic earlier. Shouldn’t this article be in the advertising section?
They’re desperate, that’s for sure.
“some people” again. Who exactly? Sufferers who clearly don’t want to get better? And who is "us"?
Does that include those of us who suffer from CFS? Are you implying that “some people” suffering from CFS are outside the group “those of us who want to help people with CFS”? How does that work exactly? And since when is expressing reasonable concerns and frustration that they are never addressed the same as "fighting"?
I thought the whole point of FITNET was to divert much-needed ME research funding into your pocket while the illness continues to be ignored. Have I misunderstood something? Must be a communication breakdown somewhere.
By the way, are you the same lady who conducted the SMILE trial into Parker the Circle-Drawer's Lightning Process? Instead of spending a huge sum of money which Bristol University has refused to disclose, you could have just read a 12-page thread about it on PR, which has been there since 2010:
From which I quote:
Is circle-drawing a behavioural or biomedical therapy? That was a rhetorical question, it's actually miraculous, and has been around since the 1st century, but study it anyway just to cover all the bases, why don't you:
There are actually a lot of good things in this article compared to the typical media articles - the acknowledgments of the following:
- that CFS/M.E. is not a single illness
-that we do not know much about it
-that it differs in children and adults
-that treatments don't work for everybody
-that CFS/M.E. is different to normal fatigue
-that patients do want to be able to do things
-that CFS is heritable
-that the metabolism is affected
-that just because the biology of CFS is not understood it does not mean it should be considered a psychological illness
-that the use of behavioural therapies does not imply it is a psychological illness [