Patient: "The latest thinking on chronic fatigue syndrome"

Andy · Dec 21, 2018

For decades, ME has been the subject of controversy among doctors, patients and the public. Conflicting views on the cause and treatment of this debilitating illness have been rife, with patients caught in the crossfire. Sally Turner, who spent years housebound with ME, uncovers the latest thinking on the illness.

Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is thought to affect around 250,000 people in Britain and 17 million people worldwide - children as well as adults. One study, published last year, estimated that the annual economic cost of ME/CFS to the nation in relation to lost income, benefits and health costs was at least £3.3 billion, yet the illness has long been plagued by controversy.

ME involves a range of debilitating symptoms that characteristically fluctuate in severity, but is characterised by 'profound and disabling activity-induced fatigue which almost always affects both physical and mental functioning. The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest' (The ME Association).

Dr Charles Shepherd, medical adviser to the ME Association, explains: "We use ME, even though it doesn’t fully describe the symptoms, because many people have chronic fatigue for different reasons, whereas ME is a specific disease process."
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https://patient.info/health/tiredne...atest-thinking-on-chronic-fatigue-syndrome-me

Esther12 · Dec 21, 2018

I didn't think that this was very good at all.

I'm not going to pull out all the weaker bits, but thought I'd mention this bit from Shepherd:

Avoiding 'boom and bust'
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I soon learned the hard way that the harder you push against the symptoms, the worse they get. Energy management is crucial to making some degree of progress, but managing this at an optimal level without specialist support can be difficult.

"There’s no point in going to bed and just staying there, but there's also no point in trying to exercise your way out of it," confirms Shepherd. "Activity needs to be gradually increased within your limitations and fluctuations. In the early stages, there’s a tendency to get into a cycle of going back to work then going off sick again and this has a very negative impact on people's chances of making an improvement. You need specialist advice early on from a physiotherapist or an occupational therapist."
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I'm not sure about this. Is specialist support really helpful for most patients? I've not seen any evidence of this. Also, there isn't any good evidence of 'boom and bust' behaviour being a particular problem with ME/CFS patients. I think that "specialist advice early on from a physiotherapist or an occupational therapist" can often make things worse rather than being something that patients 'need'.

Trish · Dec 21, 2018

Oh dear. It's a confusing mix of one person's anecdotes about her own experience, which I would say is not particularly typical, and selective quotes from the MEA which are at times odd:

"There’s no point in going to bed and just staying there, but there's also no point in trying to exercise your way out of it," confirms Shepherd. "Activity needs to be gradually increased within your limitations and fluctuations. In the early stages, there’s a tendency to get into a cycle of going back to work then going off sick again and this has a very negative impact on people's chances of making an improvement. You need specialist advice early on from a physiotherapist or an occupational therapist."
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This sounds too much like GET to me. And some people have no alternative but to stay in bed. As far as I know there's no evidence that 'too much rest' is a real phenomenon in ME, let alone whether it's harmful.

And specialist physios and OT's are not the answer as far as I can see. Their particular fields of expertise are all geared to getting people to do more, rehabilitation etc. I doubt there are many of them in the UK who really understand the needs of pwME. We more often need to be helped to do less in order to stay within their energy envelope. Why not a specialist nurse to help with this? Why a physio or OT?

I spent years trying every treatment available, conventional and alternative, and I have to say (with my head below the parapet) that it was Reverse Therapy (RT) that finally worked for me. While I'm not convinced that RT has all the answers in terms of what causes and perpetuates the illness, it certainly provided me with a practical means of managing the axis between the emotional, cognitive and physiological processes that can influence symptoms.
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Anecdote. Not helpful and nonsensical explanation not based on science. I wasted a lot of money on reverse therapy until I came to my senses. It is rubbish. I suspect people who claim it has helped are those who happen to do it at a time when their symptoms are improving naturally anyway and like the feeling that something they have put effort into and paid a lot of money for has helped them. There is no research evidence to support it.
...

I'm not impressed with Patient, whatever it is, publishing this. I don't blame the writer who is simply doing her best to tell it as she has experienced it and understands it, but the publisher should check the facts before publishing, and not be content to publish an anecdote with a few quotes from the MEA. Nor should they publish it with the misleading heading 'The latest thinking on ME'.

Trish · Dec 21, 2018

I have just been exploring Patient a bit more. It has sections written for doctors. The ME/CFS section was last updated today, so it says.
I've glanced through the treatment section. It seems they are keen on reverse therapy too. I can't understand why.
(my bolding)

Management
There is currently no curative treatment but medications can be used to help manage or control some symptoms, such as pain and sleep disturbance.

The most important aspect of ongoing care is activity management. This involves striking the right balance between activity and rest so as not to exacerbate symptoms. This is called pacing.

Activity needs to be gradually increased within any individual's limitations and symptom fluctuations. The initial tendency to get into a cycle of excessive activity (such as going back to work) followed by further time off from work through ill health. This reduces the chance of any meaningful improvement. Therefore specialist involvement is needed at an early stage, including physiotherapy and occupational therapy.

Some people find complementary therapies such as acupuncture useful for ME, but there are many unsubstantiated 'miracle cures'.

One therapy that has worked for some but not all people who've tried it is called reverse therapy (RT). RT is a simple educational process that teaches people to identify the triggers which cause symptoms such as fatigue and unexplained pain. As soon as these triggers are recognised and understood then progress can be made to eliminate at least some of the causes of distress. In this way RT can provide a practical means of managing the emotional, cognitive and physiological processes that influence symptoms.

The current NICE guideline has not been updated since 2007 and continues to be very controversial. The ME Association has long regarded these guidelines as unfit for purpose, particularly because of the inclusion of two controversial therapies: graded exercise therapy (GET) and cognitive behavioural therapy (CBT)[11]. Many patients have found these therapies to be very detrimental.

Some studies have reported that CBT and GET are effective treatments for ME. However, one study found that there may be similar or poorer outcomes when used in routine clinical practice[12].

Some studies have shown that, although CBT may bring about changes in self-reported fatigue for some patients in the short term, there is a lack of evidence for long-term benefit or for improving physical function, indicating that CBT may cause distress if used inappropriately[13].

The management of ME is therefore very controversial and it is considered by some that CBT and GET may not only be ineffective and not evidence-based but also potentially harmful for many people with ME[14].

The issue of CBT being used as a therapy on the basis of the idea that ME is essentially a psychological illness that may well be triggered but is then perpetuated by abnormal illness beliefs and abnormal illness behaviour is an approach that many patients find both inappropriate and offensive. The NICE guideline is currently being reviewed.
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Hoopoe · Dec 21, 2018

I spent years trying every treatment available, conventional and alternative, and I have to say (with my head below the parapet) that it was Reverse Therapy (RT) that finally worked for me. While I'm not convinced that RT has all the answers in terms of what causes and perpetuates the illness, it certainly provided me with a practical means of managing the axis between the emotional, cognitive and physiological processes that can influence symptoms.
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What does this even mean? It's incomprehensible.

chrisb · Dec 21, 2018

strategist said: ↑

What does this even mean? It's incomprehensible.
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I suspect that she meant the plural, "axes". There is mention in the literature of assessing the symptoms on various different axes, though there never seemed much agreement about what the axes should be.

SallyC · Dec 21, 2018

Trish said: ↑

I suspect people who claim it has helped are those who happen to do it at a time when their symptoms are improving naturally anyway
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This I wholeheartedly agree with.

Mij · Dec 21, 2018

Ditto! This was my case.

Snow Leopard · Dec 21, 2018

More from Sally Turner:
https://patient.info/health/immune-...utoimmune-conditions-women-need-to-know-about

And her blog: www dot sally-turner dot co dot uk

DokaGirl · Dec 21, 2018

OK, so I haven't read all the article yet. However, I think the latest thinking on ME should be that it is characterized by acitivity induced pain, fatigue, and exacerbation of this diseases's other symptoms such as orthostatic intolerance.

Some, however well intentioned are missing the fact that many symptoms are exacerbated with activity, and fail to note these. ME is not just fatigue with activity.

Jonathan Edwards · Dec 21, 2018

Snow Leopard said: ↑

More from Sally Turner:
https://patient.info/health/immune-...utoimmune-conditions-women-need-to-know-about

And her blog: www dot sally-turner dot co dot uk
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The bit on autoimmunity is total drivel. As dumbed down as you can get. The ME piece is pretty unhelpful and one wonders why ignorant people who call themselves journalists feel the need to misinform others about things they do not understand themselves. Presumably because they get paid by the advertisers to write stuff.

Jonathan Edwards · Dec 21, 2018

As far as I can see Patient is a front for a commercial health company - presumably subcontracted to by NHS England. But it says remarkably little on the site that I can find that really tells you what the conflicts of interest are.

Cinders66 · Dec 21, 2018

I didn’t think the autoimmune stuff could come from the mea. I also am not sure dr Shepherd would have spoken like that about CF. Key things to get the public to understand about ME versus CF, range of distressing symptoms, PEM and severity weren’t highlighted enough or at all. I thought dr Shepherd didn’t explain well enough they they use ME, using language on “going to bed and just staying there “ has to be done carefully as some of us are bedridden without choice and it wasn’t careful, and I agree regarding increasing activity and needing physios which would surely seem to an nhs professional virtually endorsing the current NHS approach. . .?

NelliePledge · Dec 21, 2018

It’s a garbled mess and no way should she be pushing reverse therapy. It would be good if one of the Drs with ME could write or maybe co-write a proper article which could then be proposed to these sort of web outlets as accurate content.

Jonathan Edwards · Dec 21, 2018

Cinders66 said: ↑

I didn’t think the autoimmune stuff could come from the mea.
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I was referring to the other article by Sally Turner, who clearly knows nothing herself.

Trish · Dec 21, 2018

https://twitter.com/user/status/1076161379168645122

https://twitter.com/user/status/1076225988386787328

Edited to try to get the tweets in the right order.

Jonathan Edwards · Dec 21, 2018

I am a bit puzzled - Sally Turner seems to be the patient as well as the author. She has also written garbage about autoimmunity. I am highly suspicious of this set up 'Patient'. It looks like a commercial scam to me. I wouldn't be surprised if they provided 'Reverse Therapy'

Trish · Dec 21, 2018

Jonathan Edwards said: ↑

I am a bit puzzled - Sally Turner seems to be the patient as well as the author. She has also written garbage about autoimmunity. I am highly suspicious of this set up 'Patient'. It looks like a commercial scam to me. I wouldn't be surprised if they provided 'Reverse Therapy'
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Given this paragraph in their section for doctors, I think you may be right.

One therapy that has worked for some but not all people who've tried it is called reverse therapy (RT). RT is a simple educational process that teaches people to identify the triggers which cause symptoms such as fatigue and unexplained pain. As soon as these triggers are recognised and understood then progress can be made to eliminate at least some of the causes of distress. In this way RT can provide a practical means of managing the emotional, cognitive and physiological processes that influence symptoms.
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Hoopoe · Dec 21, 2018

Reverse Therapy is a simple educational process that teaches people to identify the triggers which prompt the body to create symptoms such as fatigue and unexplained pain. As soon as we understand the reasons for these alarm signals then awareness is raised and we start to 'listen' to Bodymind. From that point on we work towards eliminating the causes of bodily distress. Reverse Therapy was one of the first approaches to offer Body-focused therapy. We have been established since 2002 and since that time Reverse Therapy has been improved and extended so that it now provides a complete guide to recovery from medically unexplained illnesses such as Chronic Fatigue Syndrome and Fibromyalgia.
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Sounds like someone is confusing having negative emotions with having ME/CFS and fibromyalgia.

Trish · Dec 21, 2018

Continuing the conversation:

https://twitter.com/user/status/1076246857754570752

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