Thread by @b_m_hughes

What an ill-educated, badly reasoned & frankly dumb comment this is, posted under story by @TimesONeill on new treatment standard for ME (myalgic encephalomyelitis)/CFS (chronic fatigue syndrome).

NICE are de-listing CBT & GET (graded exercise) as #MECFS therapies
#pwME

1/16

The author of the comment, MichaelS (who he?), makes many ranty points, touching on a several demeaning anti-disability tropes.

Internet comments that stigmatize disability groups are nothing new, unfortunately. But this comment is special

#pwME #MECFS #myalgicE

2/16

The commenter says, "how does he expect to measure success of such therapies, if not by patient reporting? There is no other measure of the impact of this condition!"

To which I say, "Are you kidding me?!"

#pwME #MECFS #myalgicencephalomyelitis

3/16

#MECFS is a long-term & debilitating illness, affecting c. 1% of the population. You will recognise the symptoms, similar to what we see in Long Covid: post-exertional malaise, muscle weakness, orthostatic intolerance, pain, ataxia, etc

#pwME

4/16

me-pedia.org/wiki/Myalgic_e…

Such symptoms are objectively measurable. They are severe, life-changing, & damaging to relationships, education & careers. Many persons with #MECFS are in permanent #lockdown, unable to leave their home, or even their bedrooms, for decades. All measurable.

#pwME

5/16

And contrary to what MichaelS states, many "objective measures of the impact of this condition" HAVE been studied in research.

And the research shows that the old treatments NICE are now rejecting for #MECFS - which MichaelS defends - simply don't work.

Here's a list:

6/16

Objective measure 1: Physical movement & exercise tests

Commonly used. Patients do step tasks, lift tasks, etc, as per any physical fitness assessment. To date, studies have found no detectable benefit in physical performance post-CBT/GET in persons with #MECFS

#pwME

7/16

Objective measure 2: Actometer data

Actometers are small fitted devices that record physical movements, akin to step-counters. Patients treated with CBT/GET, despite reporting "feeling better", show no improvement in actometer mobility

#MECFS

8/16

cambridge.org/core/journals/…

Objective measure 3: Walking ability

Also common. A frequent standard is the self-explanatory "6-minute walk test". Patients treated with CBT/GET show NO IMPROVEMENT in walk test score, compared to untreated patients

#MECFS #pwME #MyalgicE

9/16

journals.sagepub.com/doi/full/10.11…

In fact, in one major study, the walking ability of patients with #MECFS treated using CBT/GET ended up SO POOR that they actually met the criteria for a lung transplant

#pwME #MyalgicE #myalgicencephalomyelitis

10/16

sciforschenonline.org/journals/neuro…

Objective measure 4: School/work attendance post-treatment

Objectively tracked school attendance does not improve following CBT/GET treatment.

None of the patients alleged to have been cured in the #PACEtrial ever returned to work

#MECFS

11/16

bmj.com/rapid-response…

Objective measure 5: Disability status as per disability payments

Analyses of persons treated using old standard showed their disability payments INCREASED afterwards, even for those that the CBT/GET therapists claimed had "recovered"

#MECFS

12/16

journals.sagepub.com/doi/10.1177/13…

The main problem for CBT/GET therapists is that objective measures always reveal their treatments to be useless as treatments for #MECFS.

Most likely, this is PRECISELY why they like to pretend that objective measures are "impossible"!

Quelle surprise!

#pwME #MyalgicE

13/16

Instead they prefer patient self-reports, but only *after* using CBT to encourage patients to *focus on positives*.

CBT actively aims to change a patient's frame of reference re own health.

Thus, *self-reported* health "changes"...but *actual* health does not!

#MECFS

14/16

It's a shame people like MichaelS feel so entitled as to comment on news stories despite having such poor knowledge.

I suggest they start by READING THE LITERATURE on #MECFS & not allowing themselves to be brainwashed by scientifically illiterate physician activists...

15/16

In short, there are MANY objective measures of treatment impact in #MECFS. The "scientific community" know this quite well.

NICE are correct to reject the old treatment standard.

Finally, here's a primer I wrote that might be helpful.

#MECFS

16/16

https://twitter.com/b_m_hughes/status/1426929801038860292