Sam Cam’s sister stricken with M.E. for a year | Daily Mail | 27 June 2015

[Bob]

So, how many people have been cured of ME by cold water? Either baths, showers or diving into the Atlantic ocean?

Not me!

 

[daisybell]

Cold water simply exacerbates my Raynauds so then I would have to spend the next ten minutes gradually warming my waxy white/blue hands and feet back up again!! Not for me...

 

[Wildcat]

I sat on the beach on one of the hottest days of the year under a pile of jackets and a car blanket, uncontrollably shivering and teeth chattering. Everyone else was stripped off and sweltering, but a slight breeze sent my temperature plummeting. I warmed up after about ten minutes .... that was ten minutes of entertainment for everyone else nearby.

Between being too ill/weak to swim, and common temperature control problems in ME, diving into the Atlantic ocean would be an effective death sentence for many, if not most, ME sufferers.

 

[Undisclosed]

People with chronic fatigue, depression, etc can adapt and tolerate the immediate effects of cold water --

• hyperventilation -- a natural reaction to cold.
• narrowing of the arteries (vasoconstriction), leading to the heart having to pump harder (increased heart rate) and increased blood pressure.

This physiological reaction would be very problematic for people with ME and dangerous. If what's her face in the Daily Fail article claimed that cold water had positive effects, then she didn't have ME or was already well over it.

 

[skipskip30]

I imagine she would have recovered at the same time anyway, as many people seem to within the first 3 years (not enough unfortunately!) seem to. While i would never never wish the illness on her, it doesn't really help the cause in the UK that she was seemingly 'cured' in such a way.​

 

[charlie1]

Part of the 'treatment' protocol was exercise (naturally). As I was unable to comply with the physical demands that were initially recommended, I was prescribed weekly cold water swimming instead. Every Friday morning I was forced into the pool and, since I was too weak to actually swim, I was left to stand, up to my chest in cold water for 45 minutes each session.
Prior to my "swim" I was able to walk to the poolside. However, post-"swim", I had to be carried out of the pool and put to bed. I was virtually hypothermic, unable to move or speak, my heart beating on the go slow and blue from head to toe. I weighed less than 6st and yet it was deemed perfectly reasonable to subject a child to such torture - and torture it was. Despite seeing absolutely no improvement whatsoever in my condition, this regime was continued for 9 months.

@Revel , that is so sad. What a horrible experience for you to endure
xo

 

[Snowdrop]

The British press need to hear about real ME stories that aren't either premeditated propaganda or actually about an non-ME illness in disguise.

There are plenty of them by now--and they are not difficult to verify.

 

[Anabel]

I'm a bit late to this but, as much as I think the Daily Mail is a rag, I think it was a direct quote. I'm basing that on her tweets.
In one of them, she said she had CBT at Maudsley and this was another tweet:

Emily Sheffield‏@emilysheffield Jun 30
@TweetTipsforME The swim was a turning point for me as I had relapsed recently and it jolted me out of feeling sorry for myself

Yeah, right. Whatever. At least that wasn't in the Daily Mail, fortunately. I can imagine the families and friends of people with ME who already think that they're malingerers, etc., latching on to the 'feeling sorry for myself' part.

 

[gregh286]

Must have woke her up from the the daft dream state she was in.
Give us a break FFS.

 

[Roy S]

Emily Sheffield tweeted on June 30:
"I saw a renowned dpecialist at the Maudsley hospital who used cognitive techniques."
"The swim was a turning point for me as I had relapsed recently and it jolted me out of feeling sorry for myself "
　
My concern is that her brother in law and others in positions of power will likely know of this and he is the Prime Minister. Otherwise, it would just be another "miracle cure" story in the UK press.

Who is likely to be the "renowned specialist at Maudsley hospital?

 

[Revel]

Well, @Roy S, I did some research for you as to who the "renowned specialist" might be. This link is to the website produced by Maudsley, advertising their services.

At least they are not misrepresenting themselves under the "Our experts" heading :

http://www.national.slam.nhs.uk/services/adult-services/chronicfatigue/our-experts-2/

 

[Roy S]

"Our experts
No experts found for service."


That's funny. And strange.

 

[Scarecrow]

Who is likely to be the "renowned specialist at Maudsley hospital?

The service director's name seems familiar.

http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

South London and Maudsley NHS Trust
Chronic Fatigue Research and Treatment Unit, Mapother House, De Crespigny Park, London SE5 8AZ. Tel: 0203 228 5075. Fax: 0203 228 5074
Our multidisciplinary team includes psychiatrists, psychologists, physiotherapists, psychotherapists, doctors and researchers. Director: Professor Trudie Chalder. [My underline.] We offer evidence-based treatment that is routinely evaluated. Our aim is to increase the person’s functioning and reduce the severity and impact of their symptoms. We also offer assessment and treatment for people with fatigue associated with chronic diseases like rheumatoid arthritis, multiple sclerosis, HIV or cancer. We offer diagnostic specialist assessment, routine blood tests, CBT and Graded Exercise Therapy Eligibility: 10+ years (we work in conjunction with our child and adolescent service), long lasting fatigue, profound disability, disturbed sleep pattern. We accept referrals from consultant psychiatrists, community mental health teams, CAMHS, GPs and GP consortia from all over the UK apart from those areas which have their own local adult services.

They're cosy with KCL (see my underlining below).

http://www.kcl.ac.uk/ioppn/about/difference/22-CBT-for-chronic-fatigue-syndrome.aspx

CBT for chronic fatigue syndrome
Our researchers were among the architects of a bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.

People who have chronic fatigue syndrome (CFS) are often unwell for considerable periods of time and the symptoms can have an enormously detrimental effect on their everyday lives: in some cases, people can become housebound or even confined to bed. In addition to the profound and disabling exhaustion – which isn’t alleviated by rest – other symptoms can include joint and muscle pain, headaches, disturbed sleep, short-term memory problems and difficulty concentrating. Approximately 250,000 people in the UK have CFS.

Professor Trudie Chalder is Director of our Chronic Fatigue Research and Treatment Unit, jointly run with the South London and Maudsley NHS Foundation Trust. The Unit offers treatment to people referred from all over the country.

When Professor Chalder and her team first piloted Cognitive Behaviour Therapy (CBT) for CFS in 1991, there were no established treatments for people who had been given the diagnosis.

CBT for CFS is based on the premise that the way people cope with the symptoms may contribute to their illness. ‘People often believe that if they don’t rest, their symptoms will get worse’, says Professor Chalder, ‘yet extended periods of rest can make people feel more tired and unwell by weakening muscles and disturbing the body clock.’

‘We think that what starts the fatigue is not the same thing that perpetuates the symptoms,’ she says. ‘People might initially develop the fatigue as the result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.

‘Beliefs and attitudes towards illness are important in many physical and mental conditions. In CFS, fear that exercise or activity may make symptoms worse can hinder recovery and inadvertently perpetuate the symptoms.’

CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms.

‘It also helps address any beliefs that may make recovery more difficult. CBT helps patients understand their symptoms, tackle the understandable fears they have about activity and encourages people to do more despite their tiredness.’

Professor Chalder has developed a version of the specialised therapy for young people that involves the whole family. Family-based CBT is routinely offered to 11 to 18-year-olds referred to the Chronic Fatigue Service. For them, the consequences of CFS are dire, impacting on education, and physical and social development as a result of long periods out of school.

The choice between rest and activity as a treatment for CFS has often been at the core of a controversial debate. Both CBT and the other NICE-recommended treatment for CFS – Graded Exercise Therapy (GET) – encourage people to become active again.

Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.

The PACE trial used the ‘Chalder Fatigue Scale’, first created in 1993 to measure physical and mental tiredness. The 11-question form is used in both research studies and specialist clinics all over the country to monitor people’s progress and assess how effective the treatment is.

Professor Trudie Chalder

Download a PDF of the information on this page >

 

[Marco]

If what's her face

in the Daily Fail.

.

The only fail here is in the so-called impartiality of this forum. It's perfectly possible to discuss the issue without resorting to insults

 

[Anabel]

I think that Scarecrow has likely found the 'renowned specialist'. ↑↑ There's another name which is very familiar.

"Professor Wessely has been a consultant liaison psychiatrist at King’s College Hospital and the Maudsley Hospital since 1991, where he set up the first NHS service for sufferers from chronic fatigue syndrome."

 

[Aurator]

The only fail here is in the so-called impartiality of this forum. It's perfectly possible to discuss the issue without resorting to insults

I'm sure no harm has been done.

I wish I could say the same about news stories of this kind and how they militate against efforts to have ME taken seriously.

As for the impartiality of the forum, given that its whole raison d'être is to have ME taken seriously, I suppose it's always going to be difficult to claim we're impartial in everything.

 

[Snowdrop]

I wish I could say the same about news stories of this kind and how they militate against efforts to have ME taken seriously.

As for the impartiality of the forum, given that its whole raison d'être is to have ME taken seriously, I suppose it's always going to be difficult to claim we're impartial in everything.

Exactly!

When a question is truly open, the right and courteous thing to do is to treat all sides and views constructively.

When the science is generally settled, or someone reveals they are running an agenda rather than constructively contributing, it is the height of cowardice to continue the pretence (as does the media) that there are still "sides" to an open question.

It is always possible to find yet another case that seems to argue that the settled facts are wrong — newspapers like the U.S. Tabloids sold at the cash registers in grocery stores, or popular tabloids like the U.K.'s Daily Mail are masters of it — but the honest response is to stand up for the weight of evidence and to criticise those running a contrary agenda, no matter how influential or well-placed they are. Anything less means that eventually the truth will be swamped, to the detriment of all except those with an agenda.

 

[Undisclosed]

The only fail here is in the so-called impartiality of this forum. It's perfectly possible to discuss the issue without resorting to insults

Well I am certainly not going to support 'what's her face' or the 'daily fail' who consistenly posts crap stories about ME that makes us look lazy and/or crazy.

 

[Mark]

As far as 'impartiality' is concerned, my responsibility as a board member is to ensure that Phoenix Rising acts (and spends) in pursuit of its charitable objectives - which are to provide services (like the forums) for patients, so basically I am legally bound to ensure that we are biased in favour of patients. Thus you might say it would be illegal for me to allow us to be 'impartial'.

That said, I do very much believe that it's of great value to patients to have an open forum, a meeting point where a full range of diverse views can be expressed and exchanged; as far as moderation is concerned, we don't take sides in that sense, and we are 'impartial' in the sense that we simply moderate according to our rules, not according to whether we agree with the ideas being expressed.

As far as the Daily Mail is concerned, personally I actually think their online content is sometimes rather interesting, covering a range of interesting stories that are off the regularly beaten track, some of them speculative, quackish or gibberish for sure, but some of them covering worthwhile science that's not be on the press's agenda. They don't bow to the Ministry of Scientific Truth, or 'Science Media Centre', which does tend to mean that they generally publish on subjects they don't really understand and where the research is poor, but they will also sometimes be the only people to publish something important that the SMC (and its industrial partners) don't want the public to know about.

But anyway, these are my personal views of course, and not Phoenix Rising's...Kina states that in her signature, and I'm getting round to doing likewise, but neither we nor the organisation are, or should be, impartial, except as regards moderating the forums fairly.

 

[EtherSpin]

In fairness to Sam Cam's sister - real person, real feelings, public thread, let's remember - I had a remarkable improvement in my bedbound, several-years-long, having-my-food-cut-up-for-me, acute-postviral-onset CCC/ICC ME after several weeks of daily cold water therapy
I'm glad she's recovered. We're very close to getting real answers from our scientists now and the days of this being the only kind of ME story that the Mail does will soon be in the past (but they'll always be there - MS has this kind of stuff, I think).

Yep, I have fingers crossed for her that this is the end, but I doubt it.
its a shame the bit about the icy ocean implies that we are a bunch of Emos with no zest for life and need a good shaking ! wow .