United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

Nightsong said:
"How a promising triathlete was left bedridden by cruel disease" (The Sunday Times):

James Walton was aiming for the world championships when he was suddenly struck down by chronic fatigue syndrome. He is now calling for more research into ME

Link | Archive link
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Good article. Plus a link to Emily’s fundraiser for AfME at the end which is good to see. Thanks to the journalist, Julieanne Corr, and to James and Emily. And extra respect to Emily for standing by James and becoming his carer having only known him for 9 months before he became unwell.
 
Yes, a good article . Thanks to James and Emily; they did a great job with their quotes.

I didn't understand this bit. Can anyone explain what is happening here:
The HSE said this weekend that it was developing a national clinical guideline for ME in collaboration with patient and service user partners, supported by the Department of Health.
“Currently there is no consistent approach to treatment of people with ME and management is based on treatment of some of an individual’s symptoms. The clinical guideline aims to address this,” a spokesman said.
“People living with ME may see doctors from several different clinical specialties, depending on the symptoms they experience and the relevant specialty into which those symptoms fall, eg neurology, cardiology and oral health. There are no specialist doctors within HSE services who manage the complex pathophysiology of ME in its entirety, and knowledge and experience of managing ME is variable.”
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(I thought the mention of oral health in that quote from the HSE spokesman was slightly weird. I can't see a specialist doctor 'within HSE services who manages the complex pathophysiology of ME in its entirety' doing a spot of dentistry as required.)

I hope any HSE 'national clinical guideline for ME' is a supplement to the NICE guideline rather than an alternative to it.
 
Hutan said:
I didn't understand this bit. Can anyone explain what is happening here:
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The looks like a disaster. Re-writing NICE to suit the girls' and boys' jobs.
It explicitly indicates that physicians are irrelevant and that what matters is the multidisciplinary service buck to which people will be passed.

Be ever so careful what you wish for guys.
 
Jonathan Edwards said:
The looks like a disaster. Re-writing NICE to suit the girls' and boys' jobs.
It explicitly indicates that physicians are irrelevant and that what matters is the multidisciplinary service buck to which people will be passed.

Be ever so careful what you wish for guys.
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Do you Jonathan or anyone have first hand information about this HSE clinical guideline for ME? Do we have a thread on it?
 
Hutan said:
Yes, a good article . Thanks to James and Emily; they did a great job with their quotes.

I didn't understand this bit. Can anyone explain what is happening here:

The HSE said this weekend that it was developing a national clinical guideline for ME in collaboration with patient and service user partners, supported by the Department of Health.
“Currently there is no consistent approach to treatment of people with ME and management is based on treatment of some of an individual’s symptoms. The clinical guideline aims to address this,” a spokesman said.
“People living with ME may see doctors from several different clinical specialties, depending on the symptoms they experience and the relevant specialty into which those symptoms fall, eg neurology, cardiology and oral health. There are no specialist doctors within HSE services who manage the complex pathophysiology of ME in its entirety, and knowledge and experience of managing ME is variable.”
Click to expand...

(I thought the mention of oral health in that quote from the HSE spokesman was slightly weird. I can't see a specialist doctor 'within HSE services who manages the complex pathophysiology of ME in its entirety' doing a spot of dentistry as required.)

I hope any HSE 'national clinical guideline for ME' is a supplement to the NICE guideline rather than an alternative to it.
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I've started a new thread on this here:

HSE Clinical Practice Guidelines for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Ireland)
 
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obeat said:
Northern Ireland comes under NICE.
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If I remember correctly, NICE guidelines do not automatically apply to Northern Ireland, they have to go through a local vetting first to check there are no specific adaptations required for the local needs. However they are usually adopted with only a few restrictions or reservations.
 
Peter Trewhitt said:
If I remember correctly, NICE guidelines do not automatically apply to Northern Ireland, they have to go through a local vetting first to check there are no specific adaptations required for the local needs. However they are usually adopted with only a few restrictions or reservations.
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Apparently NICE guidelines get adopted in NI as a whole. (Pre NG206 we tried to have an exception for ME, but we were told it was not an option.)

So yes NICE applies here.
 
“Currently there is no consistent approach to treatment of people with ME and management is based on treatment of some of an individual’s symptoms. The clinical guideline aims to address this,” a spokesman said.
“People living with ME may see doctors from several different clinical specialties, depending on the symptoms they experience and the relevant specialty into which those symptoms fall, eg neurology, cardiology and oral health. There are no specialist doctors within HSE services who manage the complex pathophysiology of ME in its entirety, and knowledge and experience of managing ME is variable.”
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While I am on high alert for this becoming a guideline for ME/CFS that resembles the 2007 NICE guidelines, and I share @Jonathan Edwards' sentiment of "Be careful what you wish for", I don't think this particular quote definitively tells us much about the direction of the guideline. That quote could just as well lead on to saying something like, We're going to have ME/CFS specialist doctors who will lead and coordinate your care.

That would be nice, in theory. I had an appointment with a consultant last week and she asked who takes care of my ME, and was baffled when I said, "No-one." And she's right to be baffled. Someone who uses a wheelchair and has significant GI issues and needs carers should have a doctor who understands their condition.

But I haven't seen a neurologist, rheumatologist, infectious diseases or any other type of doctor who would be capable of doing anything but a horrible job. The doctors I come across who say they have a special interest in it are the most dangerous, because they have a special interest in exercise and psychiatry. Whereas I think someone with MS is well-served (or as well-served as possible) by their care being coordinated by a neurologist and MS specialist nurse, for example. They still have to be referred on to urology, speech & language therapy and other areas as necessary. But there is a medical team (and wider MDT) that knows their case well, and that is very helpful when something goes wrong and they end up in hospital.

There are real problems that need to be solved, particularly at the more severe end of ME/CFS. For example, I should have had a powerchair years ago. That's the kind of thing that isn't missed when someone has a proper team. And the immense difficulties people with severe, and particularly very severe, ME have when they need to go to hospital.

The risk of having a guideline developed is that the process of being shunted towards psychiatry, exercise and CBT is made more efficient. But it's also possible that protective guidelines would be put in place that would prevent people with severe/very severe ME/CFS being not-fed to death, and people would be linked in quicker with helpful services like having their blood tests at home, and people would be seen by occupational therapy for assessment of what they need in terms of mobility aids, equipment to help showering etc.
 
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Hutan said:
I hope any HSE 'national clinical guideline for ME' is a supplement to the NICE guideline rather than an alternative to it.
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Just to make sure it's clear: the HSE guideline would apply only to Ireland, i.e. the Republic of Ireland.

A HSE guideline would not apply to the UK, and so would not apply to Northern Ireland, where the NICE guidelines would apply.

But in practice, Irish clinicians always have an eye on the NICE guidelines, and the NHS shares lots of with the HSE. It's entirely possible that the HSE guideline will refer heavily to the NICE guideline and take vast chunks of it wholesale.

Ultimately, a HSE guideline will be an alternative rather than a supplement. If the HSE and NICE guidelines differ on a point, the HSE guideline would win out in Ireland. But you wouldn't be considered entirely unreasonable for pointing to the NICE guideline since they are generally respected.
 
Thanks @Evergreen. Apologies for my confusion. The article notes that the couple live in England, and had done prior to the onset of ME/CFS. I didn't know what the HSE was, but initially assumed it had some relevance to the location of the person with ME/CFS that is the subject of the article.
 
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