Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Important point here: if the trials show no harm yet there is a massive number of reports of harms, including from trial participants, the only viable conclusion is that the trials were completely inadequate. How could it even be otherwise?

https://twitter.com/user/status/1370310707854635011

 

We have some anecdotal reports of harm from participants in a number of the relevant trials that raises the possibility that they did not have adequate means recording any harms or of establishing why people dropped out at the various stages. Further the UK specialist services providing GET are seen as not adequately recording any adverse outcomes and the UK health care system, unlike with drug treatments, has no mechanism for officially recording adverse responses to behavioural or psychological intervention.

Given the high levels of reported harm in patient surveys and the significant numbers of people reporting harm to patient charities and on social media, surely the only rational conclusion is that the lack of harm reported in published trials of GET is not that it never occurs but that it is not recorded by the researchers who believe it would not happen.

This letter surely confirms researcher bias rather than the non existence of such harm.

 

Of course the irony is that the choice of subjective outcome measure in PACE meant that the evidence for efficacy relied on believing what the patient said about being better. So there is no reason not to believe them if they say they are worse.

 

This is strange. I would have expected those trials to find harm.

Maybe this is because the diagnostic criteria for participants was too lax, thereby including people with other conditions? The result of this could be that the misdiagnosed participants improve, while the participants who actually have ME get worse, but then if you use a symptom score average of the entire group to measure effectiveness the improvements of the former cancel out the worsening of the latter and you find no effect.

Another possibility is that the exercises they used were not intense enough to cause harm / worsening. A better designed study would have multiple groups to test this. First a control group obviously, then a group that does mild exercise, another group that does moderate and finally a group that does intense exercise. If such a study were designed, I bet that they would find harm in at least the intense exercise group. Yes, such a study would be unethical, but it would at least provide more credibility to the illness and debunk GET.

 

I've sent this to the Editor of the Guardian

Dear Editor,

I was astonished to read that Dr Alastair Miller is unaware of harms due to exercise in patients with myalgia encephalomyelitis / chronic fatigue syndrome (ME/CFS). I have read correspondence from a patient of his, informing him of this very thing. His patient became catastrophically debilitated after a graded exercise therapy programme. He did not have the curtesy to respond back to them. They did not recover.

Dr Miller attended a lecture I gave at the Liverpool Medical Institute in 2011 at which I presented clear, documented evidence that can occur when graded exercise therapy is prescribed to patients with ME/CFS. He was gifted a copy of medical literature relating to ME/CFS. This included the multiple, abnormal physiological responses to exercise in patients with ME/CFS. When he left the lecture theatre, I was told by the conference organiser, that he dropped this literature on the floor.

The only reason Dr Miller is unaware of the harms caused by graded exercise therapy in patients with ME/CFS is because he chooses not to.

Multiple criticisms have been levelled widely at the poor-quality research and literature relating to the so-called benefits for graded exercise for ME/CFS that Dr Miller, Prof's Garner and White will be aware of. If they are not, it would be either astonishing or evidence of extreme avoidance of information that does not conform to their own biases. Neither are sound scientific bases for medical decision making.

Yours faithfully,
Joan Crawford CSci CEng MA MSc
Doctoral level Qualification in Counselling Psychology
Chartered Counselling Psychologist
Chester

 

Thank you So much! You are the elephant who never forgets!

 

They didn't find it because they didn't look, I'm afraid. PACE trial participants have said they tries to report harms and were ignored. Activity monitoring, the only objective evidence in the trial apart from return to work or benefit claims which could have demonstrated a reduction in activity that could correlate to harm was dropped.

AfME and MEA both ran large surveys & another one was carried out recently at the request of NICE. All if them overwhelmingly show significant harms from GET.

Interesting that some now attempt to say well, that's not how we do GET so it doesn't harm anymore. Yet this is the reverse of the argument of the Wessely school - people have been made undergo GET twice or had payouts denied because they refused to because they did the wrong kind of GET.

So, if someone is pushing GET that isn't GET as per the PACE trial manual then there is no evidence to say whether it is effective or safe. In addition, the many CFS clinics aren't recording harms or even outcomes. How can something be evidence based when you don't look for the evidence?

 

Ha ha it was pretty much the only thing I did that month

 

I've seen some good letters on the Internet (haven't read this thread today) but to be honest, they look too long. The original letter was 163 words. Letters to national newspapers are generally of that length or shorter.

Best not to try to do a thorough critique when responding to a piece or letter in a national newspaper

 

Yes, this has been noted at various times in S4ME, certainly by me, but others also.

If your trial hypothesis is based on the assumption that failure to improve, or for your condition to in fact deteriorate, or for you to drop out of the trial, is primarily due to not persevering with the treatment, then you will not recognise harms for what they actually are. Hugely risky/dangerous/unethical to design a trial that can misconstrue genuine harms from treatment as instead, failure to adhere to said treatment. Incredible combination of arrogance and incompetence.

 

Thank you

 

Fantastic letter.

 

https://twitter.com/user/status/1370376928876716032

 

Moved posts

View attachment 13566 [/QUOTE]

Interesting that Miller, (Wessley) White all have some link with either Military of Defence or DWP or insurance ?
Plus Mr Miller is obviously an outdoor pursuits fan and having been in the military would have a particular mindset ? and like Mr Garner of endurance training and deep sea diving DURING covid rehab fame.... is a kindred spirit. All lads together!

 

One wonders what sort of doctor lists kindness as a personal attribute on his CV!
So Miller and Garner are both at Liverpool Infectious Diseases - the circle gets smaller by the day.

 

Not together now though. This was from the Cumbrian site where they practice "integrated care' allegedly.... !https://www.ncic.nhs.uk/consultants/alastair-miller

 

The trials on GET use the Chalder Fatigue scale which is so bad that it is usual for many participants to be at or near the maximum score at baseline. This means that there is no way of recording that anyone got worse. 20 out of 20 at the beginning is still 20/20 at the end so no harms.

There were more drop outs in the GET group than in the other arms but this was not investigated to see if this was due to people deteriorating. Do not look you will not find.

Minor harms were greater in the GET group but were not considered important. The criteria for major harms was loosened during the trial from worse between 2 sessions to worse at a third. Very few met that probably because people like that did not go back.

In the clinics anyone not getting better or trying to report harms are often just discharged then statistics are only collected from people finishing the course.

It is not surprising you did not think of these reasons as they are so obviously problematic it is hard to see how they got past peer review.

 

It starts with an "n" and ends with "t".

 

Only one word of that description comes out my mind.

It is what the often small hard seed casing of many trees are called.

It is possible that my cognitively impaired PEM'd brain may have missed a word or 76 thousand, but that's the only one that seems to exist in my head.

But if it was that word, that word is not banned, or rude, or inappropriate in polite society, so I don't get why the asterisk exists.

Which probably means that another word exists, that I am not aware of.

This is 'disturbing'.

I will overcome, I will get over it.