My Label and Me: I’m not tired and lazy, I have ME

Andy said:
Usual cop out answer used by both AfME and the MEA when they share dubious articles
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Yes.

I don’t mind a mix of stories at all, I hope the young man does well, but including bits about people being able to recover (which he hasn’t) if they do GET & CBT or/and be strict isn’t appropriate for everyone or helpful.

Once again you’ll get family/friends/general public believing that Pwme can recover if only they’d make the effort.

I have pushed myself to do this a few times due to feeling guilty about not trying hard enough...each time I’ve relapsed badly. Exercise isn’t gonna cure ME.

@Action for M.E. this sends out the wrong message. Imagine a helpful person, seeing that you have tweeted this article, gleefully telling their very unwell friend/relative that this is what they need to do!

It just helps the false narrative and stigma. May as well tweet the exercise cures ME article that appeared in the Guardian (I think it was) some years back. We are trying to move away from this narrative.
 
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Does the wide range of stories put out by AfME include accounts of cure in four days with LP? Or recovery after stem cell therapy, rituximab or faecal transplant? I suspect those would be considered not quite suitable. So where's the difference?
 
Jonathan Edwards said:
Does the wide range of stories put out by AfME include accounts of cure in four days with LP? Or recovery after stem cell therapy, rituximab or faecal transplant? I suspect those would be considered not quite suitable. So where's the difference?
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Most recent example of a story featuring LP being shared by a patient organisation was actually by the ME Association. Not quite what you are asking but it's not just AfME who are prone to sharing things with dubious claims in them and defending the practice by saying they aren't endorsing, although they don't make that clear in their posts, and that they are doing it to show all peoples experience with ME blah blah.

Latest example from the MEA.
James shares his top-tips on what helped him in his battle with M.E. and chronic illness.

"This is a follow up to the question I got asked the most! I think the topics I cover can help anyone suffering from long-term illness... I hope it can help you or a friend."

#MECFS #MEAwareness #EightYearBattle #MERecovery #Improvement #Attitude #Pacing #Resting #Food #Diet #GlutenFree #Lactose #IBS #Supplements #Nutrition #NTFactor #ProBiotics #VitD #VitB12 #BowenTherapy #Massage #Pain #Bedbound #AlternativeMedicine
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Code: 
https://www.facebook.com/healthylivingjames/videos/408505339919403/


Mindset/lifestyle, diet, supplements and Bowen Therapy, all given unofficial endorsement by the MEA. Oh, and James just happens to run a diet blog/website.
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@Cinders66

Great new name for that other "cfs": "Fukuda Oxford NICE CFS", or FONC. Thank you! Better differentiation from ME, than just "cfs".

@Action for M.E.

Just one person's story, if inaccurate, can have a significant effect. After all, testimonials are used all
the time in advertising.

We've probably all come across people who tout the virtues of what may have cured them. But, do they stay well? I know of people who were certain they had found the key to the cure, who relapsed.
 
Wonko said:
I was poor, I was hungry, I found a pound in the street and bought a lottery ticket. I won £23,00,000.

Why are you still hungry, are you too lazy to buy a lottery ticket and help yourself out of poverty?

ETA - fictional example of the attitude shown, where blind luck is taken as the way things work.
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survivorship_bias.png
 
What other physical disease community is expected to make a full recovery without a safety net; without any effective medical help?


ETA: It is ridiculous to think that millions around the world with physical symptom pictures similar enough for serious scientists to recognize, and develop robust case definitions for (the CCC, and the ME-ICC), have mass hysteria, or a simple psychological condition.
 
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The timing of this makes me cynical.

It may be that if the right kind of exercise is done at the right time then energy envelopes could be expanded.
Workwell have info to this effect. It is not GET.

Given the various interpretations of recovered what is actually recovered? If there is no agreed definition it means whatever you want it to mean.

My son had very bad PVF. Bedbound at times, housebound and missed the last year and a half of school . To my GP, he had CFS, though never formally diagnosed. He never had PEM. To me this is the simple key diagnostic factor that would make a difference.

If diagnosis is crap, there are always going to be apples correlated to raspberries in the "fatigue" fruitbowl.

I too think the most illustrative part of this story is the relapse- it confirms the nature of this, and this is what should be explained.

It is a chronic condition.

If people were advised of this they could plan things better - if in remission and working have a job/ interest that can be part time / flexible/ be self employed to be able to cope better with any future set backs.
my daughter is looking at activities /skills that could be of use to her to be able to be more independent should health allow - we parents won' t go on forever.

What triggered this relapse -a simple infection, or a more gradual build up - and was this the same at the original onset?

Sadly this mixed messaging helps noone.
We went to a physio appointment yesterday. This was a referral from an earlier rheumatology appointment where a physio was in attendance.no hypermobility generally, but there are pain issues with neck and shoulders ( due to jaw) and hips and had thought this would be gentle stretching .it took all her energy to get up and go there.

We had been referred for GET. Were told that people with CFS can have full time jobs and lead full lives - no reason why you can' t. So no unrealistic expectations!
Were queried as to why so sedentary, no school attendance, no exercise. When we mentioned wheelchair ( walked in with stick) this was queried too.

No knowledge of brain fog, issues with low anaerobic threshold , , energy production problems, low blood volume and autonomic issues. Sleep touched on re morning routine ( morning is lunchtime) and drew an incomprehensible look( sleep hygeine was a large factor in where we are) . I obviously came across as a terrible mother.
The physio did not have a clue and was only doing her job. The lack of knowledge was startling.

We came out with 4 stretching exercises.

The most important point- my daughter is moderate/ severe . She should never have been offered GET.

Had she been newly diagnosed, i would have probably not known any better.
 
Could someone remind me - do the NICE guidelines say GET should not be "offered" to those with severe ME?

Do the guidelines actually say this?


I say "offered" because I understand many are in essence forced to do GET.

If they refuse, they may not receive financial disability support.



Assuming NICE does say those with severe ME should not do GET - why is this so?

I mean, I know even those with mild ME could be harmed with GET and the special brand of CBT used on ME patients.

However, NICE authorities still recommend GET and CBT as effective treatments for ME.

An absolutely appalling thought - but, if NICE so firmly believes ME is a psychological condition cured by CBT and GET, then why do the guidelines exclude those with severe ME?

Why would NICE not include severe ME in GET/CBT treatment?

Perhaps this authority is concerned that ME is actually a physical illness, and pushing persons with severe ME through GET and CBT would harm many, and cause negative ramifications for the NICE authorities, and others in decision making positions?

Is this hedging their bets?

Sort of like banning pwME from donating blood, while still insisting ours is a psychological condition.

(Of course, this bit of reasoning may not apply if NICE actually does recommend GET and CBT for those with severe ME.)
 
I wasn't aware the guidelines even mentioned severity, as far as I am aware they regard CFS as CF and that as psychological/behavioural, and specify that CBT/GET is the treatment of choice. I don't remember any mention of ME apart from as another name for CFS.

It is however several months since I last looked at anything NICE related, and my memory isn't what......

Of course CBT/GET is optional, according to NICE.
 
Thank you @Wonko.

It has been a while since I checked out the guidelines too - and my ME memory is not that great.

The term escapes me, but saying GET/CBT are optional as NICE does, while many are essentially forced to participate is convenient for NICE. No blame there if someone is harmed from these treatments. The blame would fall on the more minor players - medics etc. If indeed blame could even be assigned to any health pros involved.
 
Re not imposing/offering GET/CBT for pwME with the severe form of this illness - I guess I got the impression that health authorities say those with severe ME should not be put through this "therapy".

Brain fog strikes again!
 
DokaGirl said:
Re not imposing/offering GET/CBT for pwME with the severe form of this illness - I guess I got the impression that health authorities say those with severe ME should not be put through this "therapy".

Brain fog strikes again!
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Various health authorities are saying that, now, but NICE was last updated, for ME, in 2007, so AFAIK it makes no concessions as to severity, but many others on here know much more about this than I do so....

I could easily be wrong, about anything, even this (I may be wrong in assuming I may be wrong, although I may be wrong about that, life gets so confusing at times lol)
 
1.9 Key principles of care for people with severe CFS/ME, https://www.nice.org.uk/guidance/cg...inciples-of-care-for-people-with-severe-cfsme

Confusingly, this from the above section,
People with severe CFS/ME should be offered an individually tailored activity management programme (see recommendation 1.6.2.22) as the core therapeutic strategy, which may:
  • be delivered at home, or using telephone or email if appropriate

  • incorporate the elements of recommendation 1.6.2.22 and draw on the principles of CBT and GET (see recommendations 1.6.2.1–21).
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and this from the Specialist CFS/ME care section
Cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit.
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so only offer CBT & GET to mild/moderate but use the principles of GET & CBT for severe - not sure how you do that, is there some 'essence of CBT & GET' that can be given to patients?? ;)
 
Unfortunately, at the start of last year, at the age of 25 my ME made an unwelcome return and I’m now on my recovery journey again.
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He probably thinks GET and CBT will work just as well the second time around. Unfortunately having been misled by BPS activists as a child, it'll probably be impossible to convince him otherwise now until it's too late.
 
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