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NICE : "Do not do" recommendations for (not) treating ME/CFS

Messages
15,786
http://www.nice.org.uk/usingguidanc...rch.jsp?action=dndByGuidance&guidanceId=11824

I haven't seen this mentioned here before, and it looks like it was just updated a few days ago. NICE says no testing for OI, no testing for or treating viruses, no testing B12 or folate levels, no MAO inhibitors, no glucocorticoids or mineralcorticoids, no rest in response to symptoms, no vitamins/minerals/supplements should be prescribed, etc, etc.

Basically no useful testing or treatment for ME/CFS patients except for CBT/GET from an experienced therapist.
 
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peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Is there also not a "do not allow" blue badges for cars, or wheelchairs for mobility - because this "discourages us" from doing things, rather than aid us to do more. (which they do)
 

Cheshire

Senior Member
Messages
1,129
That's just insane !! It reminds the thread Tom Kindlon just posted about the Netherland policy of CFS:

"Self-sufficiency is an important aspect. The patient must not undergo any other medical examinations or treatments for CFS during CBT because he needs to be able to attribute improvements to his own behaviour.* Furthermore, he cannot, for the time being, expect to receive assistance with such things as taxi fares and applications for services and facilities (e.g. a stairlift or electric mobility scooter), since these are incompatible with the objectives of CBT. It is extremely important to motivate patients to undergo therapy."

http://forums.phoenixrising.me/inde...erlands-report-on-cfs-2005.29397/#post-448814
 

Cheesus

Senior Member
Messages
1,292
Location
UK
Assholes.

"Self-sufficiency is an important aspect. The patient must not undergo any other medical examinations or treatments for CFS during CBT because he needs to be able to attribute improvements to his own behaviour.* Furthermore, he cannot, for the time being, expect to receive assistance with such things as taxi fares and applications for services and facilities (e.g. a stairlift or electric mobility scooter), since these are incompatible with the objectives of CBT. It is extremely important to motivate patients to undergo therapy."

:eek:

One thing that actually stood out at me about that is the continual use of the word 'he'. I really dislike constantly using male personal pronouns, and it seems especially odd in the context of a disease with a disproportionate amount of female sufferers.
 

Nielk

Senior Member
Messages
6,970
I equal this madness to a doctor telling a person with an amputated leg to just walk normal, and to go for counseling which will make him better. As if CBT would bring his leg back!

CBT for ME is like for any organic chronic illness; at best it might help with some coping skills in a very difficult situation. It has no healing power though for the healing process.

Moreover, to object to possible treatment for the organic issues is purely criminal!
 

Seven7

Seven
Messages
3,444
Location
USA
I really need to know who is represnting us legally / at goverments levels. Can somebody send this to the press list we have???? We need to fight back with all we have, until then we are subject to this kind of crap that does not help anybody.
 

Legendrew

Senior Member
Messages
541
Location
UK
I'd prefer if they put a 'we don't know yet but we're working on it' under the diagnosis, causes and treatment sections, I think many would prefer that to the spouting of this sort of thing which everyone knows is utter rubbish anyway...

You'd have thought that following many other diseases such as MS and many more being treated like this prior to a better understanding of the disease, authorities would learn that it's acceptable to put a 'we don't know' when you don't. I guess that the powers that be want to give the impression that they are all knowing omnipotent beings when in truth they just don't want to appear empty handed.
 
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SOC

Senior Member
Messages
7,849
http://www.nice.org.uk/usingguidanc...rch.jsp?action=dndByGuidance&guidanceId=11824

I haven't seen this mentioned here before, and it looks like it was just updated a few days ago. NICE says no testing for OI, no testing for or treating viruses, no testing B12 or folate levels, no MAO inhibitors, no glucocorticoids or mineralcorticoids, no rest in response to symptoms, no vitamins/minerals/supplements should be prescribed, etc, etc.

Basically no useful testing or treatment for ME/CFS patients except for CBT/GET from an experienced therapist.
So if you're in the UK, you have to do everything possible under the sun NOT to get ME or CFS in your record as that's a sign for any UK doc to ignore any symptoms you have. If I were there, I'd be fighting tooth and nail to get "ME/CFS" off my record.

So if you have OI symptoms, you must not have ME/CFS, since PWME can't have OI, apparently. Take ME/CFS off your record. If you have neurological symptoms, you can't have ME/CFS according them them, right? Take ME/CFS off your record.

It's shocking that doctors are told not to test people with known symptoms simply because a certain word (acronym) is written in their file. The lack of logic is appalling.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
http://www.nice.org.uk/usingguidanc...rch.jsp?action=dndByGuidance&guidanceId=11824

I haven't seen this mentioned here before, and it looks like it was just updated a few days ago. NICE says no testing for OI, no testing for or treating viruses, no testing B12 or folate levels, no MAO inhibitors, no glucocorticoids or mineralcorticoids, no rest in response to symptoms, no vitamins/minerals/supplements should be prescribed, etc, etc.

Basically no useful testing or treatment for ME/CFS patients except for CBT/GET from an experienced therapist.

Compare to some of the things in this:

Social Security Ruling, SSR 14-1p; Titles II and XVI: Evaluating Claims Involving Chronic Fatigue Syndrome (CFS)

I started to read through it after receiving it via co-cure earlier today, and thought how different it was to NICE in some respects. Didn't manage to read it all, and I suppose it should really be compared to the Department of Work and Pensions guidelines (I presume they have something about ME/CFS), but I did notice mention I think of OI and viral loads (in the absence of anything else). Might be wrong. Probably am. One of those days :)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
http://www.nice.org.uk/usingguidanc...rch.jsp?action=dndByGuidance&guidanceId=11824

I haven't seen this mentioned here before, and it looks like it was just updated a few days ago. NICE says no testing for OI, no testing for or treating viruses, no testing B12 or folate levels, no MAO inhibitors, no glucocorticoids or mineralcorticoids, no rest in response to symptoms, no vitamins/minerals/supplements should be prescribed, etc, etc.

Basically no useful testing or treatment for ME/CFS patients except for CBT/GET from an experienced therapist.

I meant to say, the exclusions or 'do not carry out specific tests for' have been part of the Guideline since it was first published in 2007 though maybe not as specific as some of the examples you provide (I'd have to check), but tilt-table testing was one they didn't advise using - I remember that - and the others you mention before MAO inhibitors...

Don't forget Vitamin D levels ;)
 

Legendrew

Senior Member
Messages
541
Location
UK
Looking back my last GP, who has unfortunately moved away, removed CFS from my record (stating it had been excluded), I wonder whether he was doing so to ensure I could get further treatment and testing going forwards. He was very critical of the diagnosis of ME/CFS and agreed with me that it was an unhelpful diagnosis for both the patient and the physician, basically saying that we don't know what is going on but giving me the diagnosis would be worse than not.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
That was 2007. I found a bit in that link, Russ, which is contradictory to their latest stuff.

1.4.4.1 For people with moderate or severe CFS/ME, providing or recommending equipment and adaptations (such as a wheelchair, blue badge or stairlift) should be considered as part of an overall management plan, taking into account the risks and benefits for the individual patient. This may help them to maintain their independence and improve their quality of life.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
That was 2007. I found a bit in that link, Russ, which is contradictory to their latest stuff.

1.4.4.1 For people with moderate or severe CFS/ME, providing or recommending equipment and adaptations (such as a wheelchair, blue badge or stairlift) should be considered as part of an overall management plan, taking into account the risks and benefits for the individual patient. This may help them to maintain their independence and improve their quality of life.

I don't think what Val posted is anything different to what is in the Guideline already, Sue. Just a different way of presenting it - a new system I think.

There are things in the Guideline that aren't so bad. But I guess this new system/whatever is a 'handy' way for people to see 'what not to do'.

Although if you ask me there is way too much information already out there e.g. map of medicine, full guideline, various summary guidelines... the diagnosing physicians must feel rather overwhelmed by the same information being repeated.

Any actual change in the Guideline cannot occur arbitrarily, it has to happen at a review. And 'we' are now on the 'suspended' list (can't remember the actual name right now, but it means our next review wont be until 2015 at the earliest I seem to recall.

I mean check by all means, but I don't believe anything on the 'new system' is different to the full guideline. But I am shattered so can't be arsed to do it myself right now :)
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
A lovely lady called Dolphin Sezzy on another forum I was on knew what NICE truly stands for.

Nincumpoops Implementing Crap Evaluations.

Russ, it was me who said that blue badges and wheelchairs should not be offered, adding that to the list of "do nots" - I didn't provide a reference for it, but I'm postive it was in a posting by Valentijn recently.
Thus, I was surprised to see they were allowed in 2007.
 
Messages
15,786
That was 2007. I found a bit in that link, Russ, which is contradictory to their latest stuff.

1.4.4.1 For people with moderate or severe CFS/ME, providing or recommending equipment and adaptations (such as a wheelchair, blue badge or stairlift) should be considered as part of an overall management plan, taking into account the risks and benefits for the individual patient. This may help them to maintain their independence and improve their quality of life.
The mobility stuff posted by Cheshire is from the Dutch recommendations, not NICE.