Understanding ME once and for all (NHS Online website, 30 November 2010)

From the NHS Online website (“Serving NHS employees 24/7 since 1998”), 30 November 2010 (Story by Joanna Lowy)

This is how NHS Online describes itself: ‎”NHS ONLINE is the first independent on-line Healthcare community designed for healthcare professionals exclusively for NHS personnel and their counterparts in the private sector. The site is for use by all NHS employees. We have no affiliations to any political parties, the Department of Health or the NHS and are therefore not subject to censorship by these organisations. We have insisted on full independence so that NHS staff can voice their opinions, offer suggestions and discuss the service without fear of censure or reprisals.”

For the 250,000 people in the UK who suffer from ME, there can be nothing more frustrating than being told ‘it’s all in the head’.

But unfortunately, this is the reality which so often faces those who find that they’re being robbed off their lives. Here we do what so many fail to, and investigate this misunderstood disease.

Another side to the story

“It is a physical disease which affects thousands of people, many of which go undiagnosed”, says 34-year-old Celia Holland, who has suffered with it for 4 years.

“Most people get it from a virus that knocks their system and their whole body shuts down”, she explains. “The immune system becomes defunct and cannot deal with normal day to day colds or illnesses. I was in bed for 4 months when I first got ill and could not function with everyday things that we all take for granted such as making a cup of tea.

“I have changed my lifestyle substantially, and have slowly improved every year, but I do have severe relapses which keep me off work for weeks if not months. I have done a lot of courses and have dealt with the emotional side that comes from suffering with any illness through support groups. The NHS pay for nothing and don’t treat it a severe illness as a lot of people get a little bit better every year”, she claims.

Determined to extricate any psychological attachment to ME, she adds: “Anyone I have ever met with it are extremely happy and content with life, so it seems to affect people who don’t have any problems. I was really content before I got it.”

And Vikki George, 26, who’s suffered with ME for 15 years is keen to corroborate this. “I don’t suffer from any mental health problems, and ME affects me a great deal-including not having been able to walk for the past 9 years and being too weak to be propped up in bed for the last 5, however, most weeks someone makes a comment to my family about being depressed or wanting attention!”

Challenging the myth

Dr Kristina Downing-Orr, a respected clinical psychologist who herself suffered with Chronic Fatigue Syndrome (CFS), is also desperate to challenge the myth that it’s ‘all in the head’, and says her symptoms were so severe that at the height of her illness she was paralysed, bedridden and barely able to function.

“A lot of people are told they’re making it up or want attention-even by their GP’s”, she says. “I was paralysed and my GP said ‘paralysis is perfectly normal-you can’t be a very good psychologist if you can’t even handle anxiety’- so if you get this from the professionals, what are your family and friends supposed to think? There’s bullying from all around you and the whole industry is trying to capitalise on this.

“In my awful state, I researched the illness, so even though I could barely see or move, I pieced together what was wrong”, she explains. “The problem with CFS is that the body loses the ability to spontaneously recover. I found one approach from a specialist called David Mason Brown from Edinburgh, who himself had Chronic Fatigue Syndrome-he’d pieced together a programme, and based on that, I started strengthening my body- to build up my immune system in a very safe and systemised way. He gets the body working again with the trigger hormones which govern illness, and also suggests clearing out the gut, because 80% of immune system function is in the small intestine, and you need to clear that up. I also cleared out cellular waste so that energy could get to my cells. Because I had such a severe case, it took me about 9 months before I even realised the start of a difference, but I’m now walking 11 miles a day-my leg is currently broken, and I’m still walking 5 miles a day! It’s a misery and not just for you, but those around you. You want your life back-you want to be able to go to a curry house and go to the cinema-make a cup of tea! Now I have an internal robustness that I’d never have had before!”

Fusion

But even Celia, who remains unwavering in her belief that it is, for the most part, a physiological illness, accepts that, like with any severe physical illness, the mind also takes its toll.

“It creates both frustration and depression as the NHS won’t fund any research for it and doctors are uneducated and unaware of its severity”, she says.

And Dr Orr also agrees that the illness is always the result of a fusion between physiological and psychological triggers. “With David Mason Brown’s help, I was able to fuse together his medical advice with my own psychological expertise”, she says. “And as a psychologist, I know that part of the problem in a lot of people with CFS is a period of extreme stress right before they become ill, making their immune system becomes compromised as a result. My mother was very sick for a long time and then she died-and this was just before I got ill. Stress interferes with our trigger hormones, so if you don’t deal with stress, you’re going to get stuck in a loop.

“You have to, therefore, address both aspects”, she continues. “If you just address the psychological, your body might not be strong enough to respond. Also, once you stabilise the body medically, you also have to have the psychological robustness not to go back into a CF illness state. The research is out there, but why are people ignoring it? Because it’s convenient!”

But Dr Charles Shepherd, spokesperson for those suffering with ME, believes that the reason that the physiological aspects of the illness are being ignored is down to the name change from ME, to CFS, some 20 years ago.

“The medical profession didn’t like the term, ME, because they weren’t convinced there was inflammation within the brain and spinal cord, so decided wrongly to change the way it was defined by renaming it CFS”, he explains. “This umbrella has brought in an awful lot of people who are chronically fatigued, but quite often for reasons which are psychological or social-it’s like saying everyone with all different types of arthritis all need the same treatment”, he continues. “So the argument from patients groups is ‘why has all this research gone on into psychological factors and psychological treatments, without any looking into the biomedical side’? You need to look at all aspects of the illness and do what you can for those individual symptoms.”

A holistic treatment

And so enters Phil Parker, designer of a new technique called “The Lightning Process”, which is a treatment made up of both physiological and psychological elements, as it focuses on how the body and mind interact.

“What we’re really looking at is the mind body link” he explains. “You need to address the interaction between our physiology with the way we think.”

Spanning a three-day training course which is derived from osteopath, NLP and life coaching, it combines body movement with posture, and helps focus on negative behaviour by modifying the brain’s thought patterns to generate endorphins instead of stress-related hormones.

And 46-year-old Cathie Davies from Norwich, who’d suffered from ME for over 4 years, is just one of many to have benefitted from this.

“Someone I knew who’d had ME told me about the Lightning Process after she’d been on it”, she explains. “I wasn’t really too sure at a first, but I went to a talk, and although everyone was really cynical, I was very impressed, so I decided it was time.

“It absolutely blew me away”, she says. “By the end of the first day, I went for a run, had a shower, made a cup of tea, and then went singing. And the following 2 days were so powerful. You go through steps, and learn how to do them in both a physical and a mental way. And even though the steps are the same for everybody, it’s made relevant for every person individually. By the third night, I’d booked a holiday to Greece with my friend .She was looking forward to a quite holiday, but I wanted to go partying! She couldn’t believe it!”

Set up for failure?

But some, like Dr Orr, believe that many of these ‘treatments’ are more about making money than making sufferers better. It was only after throwing thousands of pounds away on what, she calls, an industry trying to “capitalise” on the illness, that she felt compelled to research the underlying causes in order to cure herself, and her recovery was so quick and long-lasting that she is now inspired to share her own groundbreaking treatment programme with others.

“I’m worried that people are being set up for failure because there’s nothing worse than when you can barely move and barely think, for someone to say, ‘I can give you back your health’-here’s the holy grail.”

And so, drawing on how she recovered, she has written a book called ‘Beating Chronic Fatigue-your step-by-step guide to recovery’, which both allows and encourages sufferers to take control of the illness and recover in their own space, and in their own time. “I spell out why current approaches are failing people, before going on to explain how to stabilise both your body and mind”, she says.

“My treatment programme is one you can do safely, cheaply, and effectively, and in your own home. Listen to your own body and respond to your own symptoms, because everyone’s symptoms are different. And always work with your doctor. There’s nothing controversial in what I’m saying, and it’s all safe. It’s about nourishing the body and nourishing the mind.”

And although both Phil and Cathie agree that “a lot of people spend a lot of money with promises of a cure which are never delivered”, he is very careful to distinguish the Lightning Process from this. “It’s not a treatment but a training programme”, he emphasises, “so instead of us doing stuff to people, what we do is discuss tools for approaching this illness, that they can then use.”

“They were very clear-it’s not therapy, it’s a training programme, and you have to work at it”, Cathie corroborates. “You have to put your trust in it, and totally believe it’s going to work.

“I’m now working as an operations manager in a community art charity, which I love. I completed a triathlon last year, I dance, I sing, and have a busy social life once again. I’m making up for lost time!”

13 thoughts on “Understanding ME once and for all (NHS Online website, 30 November 2010)”

  1. This is very disturbing. How can an NHS website show support something which has no scientific evidence to back it up? By supporting this and Parker, they are supporting his ridiculous claim that the LP has an affect on XMRV.

  2. JT: we share your concerns about claims made about LP but I’m genuinely puzzled by your post. Where exactly does Mr Parker make such a specific claim about XMRV?

  3. I have been managing my ME positively for 25 years with nutrition,excercise and positive attitude but have not got out of the loop. I have also read much rubbish about treating the illness. Here comes another one destined for the ME Community bin!

  4. JT wrote:

    “How can an NHS website show support something which has no scientific evidence to back it up?”

    JT, it is not an official NHS website. Tony has added some information to the top of the article which clarfies that:

    ‎”NHS ONLINE is the first independent on-line Healthcare community designed for healthcare professionals exclusively for NHS personnel and their counterparts in the private sector. The site is for use by all NHS employees. We have no affiliations to any political parties, the Department of Health or the NHS and are therefore not subject to censorship by these organisations. We have insisted on full independence so that NHS staff can voice their opinions, offer suggestions and discuss the service without fear of censure or reprisals.”

  5. Yes, the slides were on his website or rather, a shorter version of the presentation was, at one point, but the same content can be viewed as a YouTube here:

    Mr Parker’s scientific opinion on the Lightning Process and XMRV can be heard in this YouTube presentation:

    Slide presentation: xmrv cfs | 8:30 mins

    17 slides, no audio

    http://www.youtube.com/watch?v=R8GCp00KC78

    Uploaded: 27 October 2009

    Phil Parker, designer of the Lightning Process discusses the latest research into the xmrv virus and cfs

    @ Slides 13 and 14

    How this relates to the Lightning Process

    • If we assume that on average:

    – 67% of the cases of CFS clients that are seen with the LP have the XMRV virus,

    – And according to our findings 85% of these people recover their health in the 3 days of the LP programme

    LP and XMRV

    • The LP must be assisting these people to deal effectively with that infection in some way (we would hypothesise it is a resumption of good immune and neurological function)

  6. For those who like to know which media companies are behind websites:

    ‎”The NHS Online website is owned and operated by NHS Yearbook Ltd, a registered company in England. Company Reg No.03195027. Registered Address: First Floor, Lyttelton House, 2 Lyttelton Rd, London, N2 0EF. Telephone: 020 8457 7800″

    http://www.247mediagroup.co.uk/about.htm

    247 Media Group is Europe’s leading multimedia company. In 2008, Electronic Direct Marketing Ltd and NHS Yearbook Ltd completed their merger, creating one of the largest integrated database, print and online digital media companies in Europe, with publications and websites in the business, healthcare and energy sectors.

    etc.

  7. Pl change above details to

    Esther Rantzen was a celebrity at awards ceremony hosted by 247 Media Group on 25 Oct 2010.Some connection with NHS Online.

    Dr.Kristina Downing-Orr mentioned as both patient and medical expert in above article was a psychological commentator for the BBC (Esther Rantzen).All these details on Internet.

  8. Thanks meagenda. I wish they would stop groups like this using the name of the NHS, it’s very misleading.

  9. So, David Mason Brown suggests ME sufferers need to ‘clear out their gut?’ It’s called having a bowel movement. Most people do it once a day. It hasn’t cured MY ME! Also, how do I ‘clear out cellular waste?’ I’m glad that Kristina Downing-Orr is now able to walk 11 miles a day but she hasn’t given enough information on how long she has had ME. Some people recover completely in a relatively short space of time i.e. 12-24 months and return to full health e.g. Dame Kelly Holmes. It may or may not have had anything to do with David Mason Brown’s advice. Now Kristina Downing-Orr is an authority on ME because she had it and was lucky enough to recover.

  10. Perhaps one ought to read the book before commenting … many of your questions are answered. The book is well written and does not claim to be a miracle cure, rather it is sensitive, based on relatively reliable evidence, and indeed questions the usual treatment (or lack of) that people receive.

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