NICE Guidance on Chronic Fatigue Syndrome delayed - LUPUS UK


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NICE Guidance on Chronic Fatigue Syndrome delayed

whisperit profile image
21 Replies

Most of us here will know the life-draining fatigue that often accompanies systemic autoimmune conditions. Many will have co-diagnoses of CFS or ME. For a long time, people with ME/CFS have argued that these are "real", medical conditions, rather than the effects of psychological dysfunction or deconditioning. And that treatments like Graded Exercise Therapy (GET) and CBT were not treatments for our fatigue condition. This has been the position of the ME Association and Disability Rights UK , amongst others, too. NICE was scheduled to release new guidance acknowledging all these points this week. However, at the last minute, it has come under intense pressure from the medical establishment and has decided to delay the publication of this new guidance indefinitely.

It seems clear to me that this is a clear example of how doctors still strive to interpret our reality for us, and where power really lies.

21 Replies
misty14 profile image

Hi Whisperit, great post from you. I can also add I've just read a letter in the Times from a lady whose got 2 ill daughters. Her eldest has ME and tried the GET regime which has just made her worse. It's well known that it can for ME sufferers and been discredited.Her second daughter has Long Covid and been referred to their local Long covid clinic where they were shocked to see that the discredited GET regime is being used as a tool to help long covid patients regain their muscle strength and improve their fatigue.

Here's hoping it doesn't make these patients worse. Of course as long covid is so new maybe they're testing it out again to see what happens!. It makes me grateful whisperit I don't have either condition!. Have a good weekend. X

whisperit profile image
whisperit in reply to misty14

thanks, misty x

Roarah profile image
Roarah in reply to misty14

Since March rehab facilities near me have long hauler programs. With physical therapy in the form of GET, speech pathology and CBT therapy. The rehab center I went to post stroke treats long covid, stroke patients and ME/CFS with these same tools because they are shown to work. This rehab program gave me back my life post stroke.

misty14 profile image
misty14 in reply to Roarah

Very pleased roarah that these programs worked so well for you. Sadly, though they don't for everyone for lots of different reasons. Keep safe and well. X

whisperit profile image
whisperit in reply to Roarah

That sounds good. The reason the NICE guidance on CFS is a problem is not because GET or CBT are useless for everyone. Although both psychological problems and physical deconditioning can be important in chronic fatigue *in some people*, and GET and CBT may help, that it NOT what CFS/ME is. CFS/ME patients and many of us with the chronic fatigue associated systemic autoimmunity have suffered as a result of too many clinicians not understanding that ours is not generally the result of a psychological problem, or one that responds well to increased exertion. x

Roarah profile image
Roarah in reply to whisperit

My rheumatologist depart has many phd/md’s spending their careers searching not only for the why’s of Me/cfs but also for better serum testing and pharmaceutical treatments. It is taken as seriously at my training hospital as any other serious and life altering disease.

Roarah profile image
Roarah in reply to Roarah

This is one such study published this year by part of my treatment team.

in reply to Roarah

You’re in US though right? In which case these links might be of interest to you.

happytulip profile image

Very good post Whisperit.

suzannah16 profile image

I don't know anything about this but I fail miserably with pacing myself. If I stop doing something and take a break the brain fog kicks in and I forget to go back to whatever it was. I have to do whatever until I drop in order to get anything done, I just try not to do too many things.

murtoz profile image
murtoz in reply to suzannah16

I have the same issue with brain fog but doing things till I drop is worse! I use my phone and my echo dots to set 30 minute timers to give myself a break and also to remind myself what I was doing so it gets finished. Works way better than pushing to get something done!

whisperit profile image

great point, troublesome. We live in hope x

Roarah profile image

It has long been seen that both stroke and heart attacks are more prevalent in Me/cfs than in healthy cohorts.

Roarah profile image

My hematologist is on the national committee on best treatment options for severe covid patients because of his expertise in treating CAPS

Great post thanks. I don’t know if you follow his writing but this journalist writes excellent articles about ME/CSF. Here’s the latest:

whisperit profile image
whisperit in reply to

Tha ks, Numbers, That's a very good article, and the first I've read with an "explanation" from NICE. That they are unwilling to release evidence-based advice because clinicians would refuse to implement it is an indictment of the medical establishment. x

in reply to whisperit

Absolutely. And even worse - a friend from the long Covid community tells me - there’s a Liverpool based professor called Paul Garner who is upsetting/ angering the long Covid and ME/CSF community greatly by his tweets (disclaimer - I’m not a Twitter person nor diagnosed with ME nor have I had Covid - so only know about this through my friend) and this Guardian article:

So those who are setting store by doctors who’ve had long Covid might be getting their hopes up unrealistically I’m afraid.

Roarah profile image
Roarah in reply to

Because of David Tuller, studies on Me/cfs have greatly diminished he does more harm than good for patients. Many very knowledgeable former scientist and doctors in the field have switched their focus to treating and studying other serious illness patients with illnesses like cancer because of Tuller’s online trolling. He is hurting not helping at all in the fight to figure out the disease nor how to help it. He crowd sources his salary from Me/cfs patients yet he contributes to zero research for better diagnosis nor treatments. He is not an advocate he is utilizing Me/cfs patients’ frustrations and desperation for his own personal profit.

Titters profile image

Hello Whisperit. I like your name😊This has been a very interesting post for me and As an American I’m still navigating your health system, all the ‘players’ and how different facets of your health system are

Independent like NICE. I’m still reading

Many of the links various people have contributed. I do not have ME/CSF but was

One of my diagnosis years ago before lupus finally. Antidepressants worked mildly

And so did therapy. What I’m trying to

Portray is the real difficulty of diagnosis for

AI diseases, Chronic Fatigue etc… so many overlapping symptoms. The idea that extra exercise was/is prescribed for Chronic Fatigue makes me want to have a laugh fest.

Suffering from chronic fatigue with lupus,

If someone told me to increase my exercise

( I do my own PT in my pool I call it Toddler

Time Swim 👶) I would run away from them

Or at least hobble. :) Brain fog is not just a term; it’s like something inhaled. Sometimes

I just give up, go to my favorite chair and close my eyes. Sometimes I make toast with a lot of butter and just eat it so slowly. Anyway, now long Covid. Maybe more answers will be found. Also want to point out that I have been a victim many times

Before my diagnosis that perhaps the cuckoo bird lived in my head. I have to acknowledge that unfortunately the

Cuckoo does live in many heads and Doctors have to figure that part out/ in doing so they demean and insult us real

Sick ones unfortunately. I’m chronically

Sick and a bit cuckoo 😝 This is long but have question/Are medicines prescribed

For a diagnosis of chronic fatigue?

whisperit profile image
whisperit in reply to Titters

Yours is a familiar experience, Titters. Whilst I think most of us push ourselves and try to avoid deconditioning, the chronic fatigue we experience is decidedly not amenable to the kind of rehab I did when I was recovering from multiple fractures years before my autoimmune condition developed. Increasing demand just damages us.

As far as you last question goes - sadly, there is no treatment that we know to be reliably effective in CFS, and/or the chronic, profound fatigue associated with systemic autoimmunity.

I'm sure CBT and GET can be helpful for a few people, but they aren't typical x

in reply to whisperit

More to the point perhaps - most of us cannot get CBT or ACT in UK unless we are able or prepared to do it online. If we have severe chronic fatigue, whether secondary to AI or primary - then of course brain fog and low mood are an inevitable consequence.

Even if we accept the wish for or need for psychological help, which I think most living with chronic illness probably do - one to one help is always preferable on many fronts - due to the disorganised processing that comes with any kind of chronic fatigue.

Sitting in front of a laptop is very tiring of itself on the eyes and the brain, so is often counterproductive and therefore a false saving for the NHS.

But increasingly it’s very hard to access one to one without paying for it. And even those who work as trained psychotherapists as private practitioners aren’t necessarily on a footing with qualified clinical psychologists.

So maybe it’s time the NHS paid and incentivised trained psychotherapists to come back and work for those who need this kind of therapy most, rather than sticking to the wealthier section of society who can afford it. Then it will become more accessible - even if it is virtual. This is certainly what I’m looking for personally.

At least then it’s not modular and you don’t have to remember to save passwords, follow instructions saying next or continue and read or listen to generic stuff about pain and fatigue without being able to speak to someone qualified to respond appropriately to each person’s unique set of circumstances.

I think it’s hard for those from a different culture ie America, more used to therapists as part of many people’s regular lives, to grasp the situation here with NICE and the autocracy and inherent paternalism that exists in many parts of the NHS. And this was prevalent well before the pandemic so now NICE, by failing to act in support of those with ME/ CFS, have created the perfect storm.

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