Dr Alastair Miller's misleading claims about effectiveness of the English NHS (rehab) ME/CFS clinics, Royal Society of Medicine webinar in Sept '20

Andy

Andy

Retired committee member
Andy said:
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Proponents of cognitive behavior therapy and graded exercise therapy as treatments for CFS, ME, or their variants keep trotting out their favored interventions for patients suffering from persistent fatigue and other symptoms after acute Covid-19. Last week, the Royal Society of Medicine conducted an online webinar called “Long COVID: Understanding the shadow of the virus.” Three physicians participated: Alastair Miller, an infectious disease expert from Liverpool who used to run a local CFS/ME clinic; Carolyn Chew-Graham, a professor of general practice research at Keele University in Staffordshire; and Nisreen Alwan, an associate professor of public health at the University of Southampton.
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https://www.virology.ws/2020/10/01/tria-by-error-royal-society-of-medicine-webinar-on-long-covid/
 
https://www.virology.ws/2020/10/01/tria-by-error-royal-society-of-medicine-webinar-on-long-covid/

Alastair Millar says
And from our results, which are pretty much in line with PACE and all the other centers that are using these therapies, we reckoned that
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Yet we know that the majority of these "other centers" neither collect nor record patient outcomes & certainly have no clue what happens to patients in the long term.

The reasoning presumably being that the treatment they inflict can't harm so there's no need to bother. Yet, if they were so confident about the success of these clinics and, if as Millar claims the clinics need support, why not collect data that could demonstrate effectiveness? Perhaps because they know that the data would show something rather different?

If the clinics were successful patients would be flocking to them and GPs would be inundated with referral requests. Patients who've been through the clinics don't seem to share Millar's view & surely it's their opinion that counts?

Since when is it the role of the patient to support a clinic anyway? Typical cart before the horse thinking that has failed patients for so long. We patients don't exist to keep the medical profession in jobs, clinics should exist to help patients lead as normal & healthy a life & of the best quality possible.

All patients deserve better than this regardless of diagnosis.

Edit - removed repeated sentence.
 
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This is a quick post I've just posted on Facebook. If anyone spots any errors, let me know; alternatively, let me know if you think everything is correct. I will then make a Twitter thread about it (unlike with Facebook posts, Twitter posts can't be edited)

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As Dr David Tuller reported*, the Royal Society of Medicine (RSM) conducted an online webinar recently called “Long COVID: Understanding the shadow of the virus.”

Among others, it featured Dr Alastair Miller (an infectious disease expert from Liverpool who used to run a local CFS/ME clinic) who claimed:

"And from our results, which are pretty much in line with PACE and all the other centers that are using these therapies, we reckoned that about one third of our patients made a complete recovery and go back to a pre-morbid existence, about a third made an improvement but still had some symptoms, and about a third did not recover.”
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Fortunately, we don't have to depend on Dr Miller's claims: we actually have a published paper on the English NHS (rehab) ME/CFS clinics**.

A quick review of the data shows that Dr Miller's claims don't add up:

(From table 3)
At 1 year after initial assessment
I have been able to return to work or increase my hours: 18.0%
I have stopped working or reduced my hours: 34.8%

(From Table 6)
At 2- to 5-year follow-up
I have been able to return to work or increase my hours: 23.7%
I have stopped working or reduced my hours: 34.9%

(From table 4)
At 1 year after initial assessment
Do you think that you are still suffering from CFS/ME? No: 2.8% Uncertain: 10%
Note, that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy

(From table 6)
Do you think that you are still suffering from CFS/ME?
At 2 years. No: 5.0% Uncertain: 8.8%
At 3 years: No: 2.4% Uncertain: 7.2%
At 4 years: No: 6.6% Uncertain: 11.3%
At 5 years: No: 8.2% Uncertain: 9.2%
Again, note that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy

*Trial By Error: That Royal Society of Medicine Webinar on Long-Covid https://www.virology.ws/2020/10/01/tria-by-error-royal-society-of-medicine-webinar-on-long-covid/

**Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England" https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3

 
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"Dr. Alastair Miller, is a semi-retired infectious diseases physician. He was a founding member of the British Association for CFS/ME (BACME) and served as Principal Medical Adviser from 2010-2015 for Action for ME.[1]"
"In a Science Media Centre press release in 2011, Dr Miller reaffirmed his belief in CBT and GET"
"This endorsement lead to a petition drive for his resignation from Action for ME, along with others who supported funding of the Pace trial. The petition failed."

http://me-pedia.org/wiki/Alastair_Miller#cite_note-9
 
Tom Kindlon said:
This is a quick post I've just posted on Facebook. If anyone spots any errors, let me know; alternatively, let me know if you think everything is correct. I will then make a Twitter thread about it (unlike with Facebook posts, Twitter posts can't be edited)

---

As Dr David Tuller reported*, the Royal Society of Medicine (RSM) conducted an online webinar recently called “Long COVID: Understanding the shadow of the virus.”

Among others, it featured Dr Alastair Miller (an infectious disease expert from Liverpool who used to run a local CFS/ME clinic) who claimed:



Fortunately, we don't have to depend on Dr Miller's claims: we actually have a published paper on the English NHS (rehab) ME/CFS clinics**.

A quick review of the data shows that Dr Miller's claims don't add up:

(From table 3)
At 1 year after initial assessment
I have been able to return to work or increase my hours: 18.0%
I have stopped working or reduced my hours: 34.8%

(From Table 6)
At 2- to 5-year follow-up
I have been able to return to work or increase my hours: 23.7%
I have stopped working or reduced my hours: 34.9%

(From table 4)
At 1 year after initial assessment
Do you think that you are still suffering from CFS/ME? No: 2.8% Uncertain: 10%
Note, that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy

(From table 6)
Do you think that you are still suffering from CFS/ME?
At 2 years. No: 5.0% Uncertain: 8.8%
At 3 years: No: 2.4% Uncertain: 7.2%
At 4 years: No: 6.6% Uncertain: 11.3%
At 5 years: No: 8.2% Uncertain: 9.2%
Again, note that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy

*Trial By Error: That Royal Society of Medicine Webinar on Long-Covid https://www.virology.ws/2020/10/01/tria-by-error-royal-society-of-medicine-webinar-on-long-covid/

**Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England" https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3

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Note: "I have been able to return to work or increase my hours" doesn't necessarily mean they improved as they could have been out of work due to caring responsibilities. So for an exact comparison, I combined the 2 "I have stopped working or reduced my hours" categories "I have stopped working or reduced my hours because of CFS/ME" and "I have stopped working or reduced my hours for other reasons".

Given that they have subdivided stopping work into 2 categories
"I have stopped working or reduced my hours because of CFS/ME"
and
"I have stopped working or reduced my hours for other reasons"
they similarly should have subdivided
"I have been able to return to work or increase my hours"
into
"I have been able to return to work or increase my hours because of CFS/ME"
and
"I have been able to return to work or increase my hours for other reasons"
 
There is currently no pharmacological treatment that will improve the symptoms of CFSME but despite some controversy over trial evidence, it seems that some behavioural interventions such as cognitive behaviour therapy and graded exercise supervised by appropriately trained therapists does help some people to recover and there is no reason to believe that similar approaches may not help with post Covid19 fatigue.
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https://measussex.org.uk/dr-alastair-miller-on-me-cfs-and-covid19-september/
Disappointing to see these comments on a charity website, but then this charity has been tied to the biopsychosocial approach to ME/CFS for a long time, from what I have seen.
 
also now on their website
CFS/ME and COVID19, Dr Alastair Miller – December
By admin On 1st December 2020
| No Comments

Some people with COVID‐19 will need support for physical, emotional and mental symptoms long after they have recovered from the acute phase of the infection. Many of those with so‐called ‘long Covid’ are likely to have a post‐viral condition very similar to chronic fatigue syndrome/myalgic encephalomyelitis for which management guidelines and a network of NHS clinics already exist.

See: <https://wchh.onlinelibrary.wiley.com/doi/full/10.1002/tre.776> https://wchh.onlinelibrary.wiley.com/doi/full/10.1002/tre.776
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https://measussex.org.uk/cfs-me-and-covid19-dr-alastair-miller-december/

eta: if anyones interested Dr Miller is on twitter
 
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Miller tweets

"CBT relieves symptoms in cancer, the principle of GET is used in cardiac rehab......"

Really? Exactly which cancer symptoms does CBT relieve that aren't already being treated? Conveniently forgetting that CBT in cancer is supportive & not directive.

following the same logic, chemotherapy is pretty effective in cancer treatment, you wouldn't suggest using that to treat ME or covid would you? Especially, where there is no evidence of efficacy and significant risk of harm if given inappropriately.

Ditto cardiac patients are not the same as ME or covid (unless they happen to also have cardiac problems) patients & so why would you use the same treatment?

As a doctor you're supposed to understand that different diseases require treatment that is appropriate to the disease and not the treatment that it suits the doctor to peddle.

All this guy is demonstrating is that he's a one trick pony. He's made himself an expert in delivering a single therapy and shows no real understanding or interest in the disease he's supposed to be treating.

Like a toddler before they develop observation skills and stop trying to batter a square brick into a round hole, realising some shapes & solutions only work when appropriately applied.
 
Invisible Woman said:
Miller tweets

"CBT relieves symptoms in cancer, the principle of GET is used in cardiac rehab......"

Really? Exactly which cancer symptoms does CBT relieve that aren't already being treated? Conveniently forgetting that CBT in cancer is supportive & not directive.
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The serial misrepresentation of this stuff by the likes of Miller seriously limit their claim to be the aggrieved party in the debate, and to be treated with 'due' respect. There is simply no excuse left at this stage for them to not know the problem with this misrepresentation.
 
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