[Unherd] Inside the Lyme disease industrial complex: Private clinics exploit uncertainty - Deborah Cohen

[InitialConditions]

LINK

"One of the few things [Alastair] Miller could offer was cognitive behavioural therapy (CBT) and graded exercise — which have often been prescribed for patients with ME/CFS, which often presents similar symptoms. However, those options have narrowed. NICE’s latest ME/CFS guidelines advise against graded exercise therapy and say CBT should not be presented as a cure. The review was bitterly contested, with accusations of lobbying by patient groups; many members of the guideline committee resigned in protest. Miller argues that the result has left NHS doctors with very little to offer people with chronic fatigue, which inevitably pushes them online where there are plenty of private clinics ready to take their money."

 

[V.R.T.]

https://unherd.com/2026/10/inside-the-lyme-disease-industrial-complex/

"One of the few things [Alastair] Miller could offer was cognitive behavioural therapy (CBT) and graded exercise — which have often been prescribed for patients with ME/CFS, which often presents similar symptoms. However, those options have narrowed. NICE’s latest ME/CFS guidelines advise against graded exercise therapy and say CBT should not be presented as a cure. The review was bitterly contested, with accusations of lobbying by patient groups; many members of the guideline committee resigned in protest. Miller argues that the result has left NHS doctors with very little to offer people with chronic fatigue, which inevitably pushes them online where there are plenty of private clinics ready to take their money."

Again the lie that something is always better than nothing.

Nothing would mean my partner and I were still mild. Something meant we are moderate and severe respectively.

Miller is an extremely disingenuous individual.

 

[Eleanor]

"The review was bitterly contested, with accusations of lobbying by patient groups"

*gasp* Lobbying!!

I'm sure it's only "patient groups" who would ever do such a thing, right? Right?

 

[skronen]

Has anyone read this piece? is it worth reading? I'm sure there is a lot of nonsense around lyme but the above paragraph is pretty revealing. Unherd has been very skeptical of long covid as well.

 

[rvallee]

Quack v. quack and lies on both sides. In this case it's bad enough that Unherd deserves some flack for being lazy enough to publish exploitative lies when trying to denounce exploitative lies.

You don't fight disinformation and quackery with official disinformation and quackery. This is exactly how truth dies.

 

[InitialConditions]

Has anyone read this piece? is it worth reading? I'm sure there is a lot of nonsense around lyme but the above paragraph is pretty revealing. Unherd has been very skeptical of long covid as well.

I've skim-read it. It seems ok, apart from the NICE guideline stuff. Doesn't really add much to the debate — we know the tests can't be trusted and we know there are expensive, unevidenced treatments. The article is not sceptical of the concept of chronic lyme per se.

 

[rvallee]

A Royal Liverpool University Hospital study found that just 27 out of 115 patients referred with possible Lyme disease were eventually diagnosed with it.

What is supposed to be nefarious about this? Most medical tests are negative. This actually sounds rather high, all things considered, as in pre-evaluations were pretty good to get almost 1/4 right.

Also re-reading the quote from Miller, it doesn't even make sense. There is no guideline for CBT or GET regarding Lyme, which is a problem in itself, so he is applying the ME/CFS guideline, which might be appropriate but also he knows very well that the NHS is ignoring it and in fact might be advising it more than in the past. And obviously removing harmful and useless treatments is a good thing in itself, while leaving them is obviously bad in itself.

Experts don't lie like that. Being this dishonest is completely incompatible with even the notion of expertise.

 

[InitialConditions]

Also re-reading the quote from Miller, it doesn't even make sense. There is no guideline for CBT or GET regarding Lyme, which is a problem in itself, so he is applying the ME/CFS guideline, which might be appropriate but also he knows very well that the NHS is ignoring it and in fact might be advising it more than in the past.

They think it's all the same thing, so they treat it as such. Unexplained fatigue and/or pain with some other stranger symptoms. The Lyme part, or the covid infection part, or the PEM part, is redundant.

 

[Peter T]

The review was bitterly contested, with accusations of lobbying by patient groups; many members of the guideline committee resigned in protest.

In this quote the information about many protest resignations is false. Two people who might be assumed to be against aspects of the new ME/CFS NICE Guidelines, because of their BPS opinions, did resign, but they only resigned once the committee had agreed the guidelines and never publicly explain why they resigned.

 

[Tom Hill]

Two people who might be assumed to be against aspects of the new ME/CFS NICE Guidelines, because of their BPS opinions, did resign, but they only resigned once the committee had agreed the guidelines and never publicly explain why they resigned.

If it was just you and your betrothed at your wedding, you would not say it was attended by “many people”.

 

[MrMagoo]

Patients being pushed towards “private clinics” who take their money?

Where are these private clinics please? And how are they different to the Brain Train?

 

[Concentric_Spiral]

Did Lyme treatments for many years. Blegh.

 

[dave30th]

The review was bitterly contested, with accusations of lobbying by patient groups; many members of the guideline committee resigned in protest.

there was no lobbying by professionals opposed to changes??? Really? And it is not true that "many" resigned in protest. Three stepped down without saying why and Charles Shepherd left because of a conflict. Out of 21, it is absurd to characterize that as "many."