Lecture by Emily Beardall of Action for ME

[MeSci]

I could only find a thread saying that this was coming, not that it had been provided:

"Our November 2017 webinar was led by pharmacist and Action for M.E.volunteer, Emily Beardall, who also has M.E. A recording of the webinar, and its accompanying slides, are now available to view online.

https://vimeo.com/simonwade/review/245274449/bdaadd0d71
https://www.dropbox.com/s/6vkm0zglg6xp6bw/1749 Meeting the needs of people with MECFS.pdf

Aimed at GPs, pharmacists, dentists, community nurses, OTs, physiotherapists, nurses and midwives, it will support you to describe the characteristic symptoms of M.E. and understand how they affect daily life; identify and apply practical measures to enhance consultations and
treatment planning; have an overview of evidence-based treatment and where to find further guidance; learn more about research into the underlying pathology and potential symptom management; and signpost to effective self-management resources and support.

--------
(c) 2017 AfME"

I thought it was quite good.

 

[MEMarge]

It seems pretty good to me. I have just whizzed thro the slides and will listen in a few days.

Most striking problems for me were:

• Prognosis slide. "most people improve slowly over time" and The prognosis for young people and children is more optimistic ?most/many recover within 2 years.
• The summary slide for "Non -pharmacological management stilll includes GET and CBT, but the following slide which expapands on these gives a clearer picture of their aplication.

ALSO she includes that there are concerns about the validity of PACE

 

[Valentijn]

Not awful, but I still get the impression that AfME is utterly incapable of understanding or evaluating research.

• Heterogenous group of patients may mean the
presence of sub-groups or phenotypes
• Could explain why establishing a cause, a diagnostic
test and a successful treatment is proving difficult.

Or some research is complete shite, reliably generating false-positive results due to a combination of bias built into the treatment, lack of blinding, and subjective outcomes. If objective measurements are used, CBT/GET benefit no one - even people without PEM. There is literally no subgroup helped by CBT/GET. Either the ME patients aren't able to improve conditioning due to disease, or patients with a different illness have no deconditioning to improve upon.

• Research to establish sub-groups is being carried out
based on symptom clusters, comorbidities, genetics,
responses to drugs, etc

This sounds like the spiel from MEGA, which 1) isn't being carried out, and 2) would suggest that AfME hasn't learned a damned thing, despite distancing itself from Crawley.

• Several different diagnostic criteria in use means
studies may be looking at different groups of people–
difficult to compare results and for replication

So stop supporting Oxford criteria research? Or rebrand as a generic fatigue charity. It's absurd for AfME to complain about a problem which they contribute to.

She also lists depression and anxiety as "common comorbidities" which again highlights their inability to accurately evaluate research using stupidly inappropriate questionnaires to diagnose mood disorders in physically disabled people.

She's a huge fan of amitriptyline as well, even though it has a reputation of making most ME patients feel awful. And the repeated emphasis "Careful explanation should be given that these drugs are not being used as antidepressants in this situation" is right out of the BPS psychosomatic playbook.

• Graded exercise therapy (GET) – May be helpful for a specific sub-group,
though some report adverse effects on symptoms and functioning. CG53
says GET should be completely avoided in people with severe M.E./CFS
and, in mild/moderate M.E./CFS, only be delivered by appropriately
trained professionals. SGPS says it’s essential that “agreement and
negotiation” at the centre of any GET programme.

GET isn't helpful for any subgroup, and is harmful to a large majority of patients. Remember the PACE long-term followup? The Wiborg actometer results? The huge patient surveys, including from AfME?

• Cognitive behavioural therapy (CBT) – Coping strategies and coming to
terms with illness

No, the only form of CBT studied in ME/CFS has been based on illness-denial, not coping. If NICE and AfME are going to sell the therapy based on poorly run trials, they can at least acknowledge what it is.

It's also annoying that three full slides are all about herself

 

[MeSci]

It seems pretty good to me. I have just whizzed thro the slides and will listen in a few days.

Most striking problems for me were:

• Prognosis slide. "most people improve slowly over time" and The prognosis for young people and children is more optimistic ?most/many recover within 2 years.
• The summary slide for "Non -pharmacological management stilll includes GET and CBT, but the following slide which expapands on these gives a clearer picture of their aplication.

ALSO she includes that there are concerns about the validity of PACE

I agree that the improvement statement was problematic, and the apparently-positive statements about GET and CBT. I wondered whether she included them under pressure.

At the end (I'm not sure if before) I think it was stated that she wasn't able to do formal work due to ME.

 

[Esther12]

GET isn't helpful for any subgroup, and is harmful to a large majority of patients. Remember the PACE long-term followup? The Wiborg actometer results? The huge patient surveys, including from AfME?

If pointing to the PACE LTFU data, which showed GET making no overall difference for self-reported outcomes, then if assuming GET is harmful to some, presumably it's beneficial to some too?

I've not watched this lecture yet, and do not trust AfME to do a good job of picking apart the spun claims made about GET by the researchers that they work with, but it seems pretty difficult to confidently say anything much about GET's impact on CFS patients when so much of the research in this area is so poor. It's possible there's a subgroup that find a form of GET genuinely useful. Some people report harms, some people report benefits, and there's not much good evidence of anything.

I think that the clearest 'harms' from GET come from the misleading claims made about it's efficacy. I'm much more confident of the evidence of spin and BS there than anything else.

 

[Valentijn]

If pointing to the PACE LTFU data, which showed GET making no overall difference for self-reported outcomes, then if assuming GET is harmful to some, presumably it's beneficial to some too?

Efficacy isn't the opposite of harm, even if surveys tend to get phrased that way. And in PACE it wouldn't be a matter of balancing each group against itself (effective versus harmful), but rather balancing it against their half-assed control group. And that showed no benefit.

Yes, some subjectively improved while doing CBT/GET - but it wasn't due to CBT/GET. Recovery and improvement weren't based on group averages, but rather upon percentages of patients from each group which crossed a threshold. But there was never a difference in recovery for that, and the difference in the percentage of patients improved disappeared at followup.

Even if we assume there is a hidden benefit to a few which is concealed by the harms done to others in the same group (instead of being concealed by improvements in a control group), it would be rejecting trial methodology and group analysis in favor of what is essentially anecdotal report. And since those anecdotal reports of improvements from PACE would be tainted by the same pro-efficacy bias that permeated the entire trial, it wouldn't be a better indication of isolated improvement.

 

[Jonathan Edwards]

Even if we assume there is a hidden benefit to a few which is concealed by the harms done to others in the same group (instead of being concealed by improvements in a control group), it would be rejecting trial methodology and group analysis in favor of what is essentially anecdotal report. And since those anecdotal reports of improvements from PACE would be tainted by the same pro-efficacy bias that permeated the entire trial, it wouldn't be a better indication of isolated improvement.

I am afraid I agree with Esther12 that you are arguing a circle here Valentijn. If the data are all based on bad methodology then the most we can conclude from LTFU is that the outcome is neutral. patient surveys are anecdotal too - or at least wide open to reporting bias. I don't think we are claiming that GET must help some people, just that the conclusion that the great majority are harmed is as soft as PACE itself.

 

[Jonathan Edwards]

Aimed at GPs, pharmacists, dentists, community nurses, OTs, physiotherapists, nurses and midwives, it will support you to describe the characteristic symptoms of M.E. and understand how they affect daily life; identify and apply practical measures to enhance consultations and treatment planning; have an overview of evidence-based treatment and where to find further guidance; learn more about research into the underlying pathology and potential symptom management; and signpost to effective self-management resources and support.

This is what worries me here. The implication is that once you have listened to this video you will know all about ME/CFS and be able to happily continue in the delusion that you can safely and effectively look after people with the condition. The speaker might be qualified as a patient to advise but there is no way that a pharmacist is qualified to advise other health care workers how to manage ME.

For the basic reason that nobody really knows what the heck it is or what to do. That is what the video should be saying: 'nobody knows the heck what it is or what to do beyond listening carefully to the patient and trying to use common sense and cause as little harm as you can.'

Why can't my colleagues be honest like that?

(OK there are some facts about recovery rates and results of trials - but they are not very well dealt with.)

I agree that this old chestnut about using low dose amitriptylene is just hearsay from the old guard physicians who reckoned that as long as you gave the patient something that would shut them up.

 

[arewenearlythereyet]

Yes, some subjectively improved while doing CBT/GET - but it wasn't due to CBT/GET.

I think it's possible that some positive outcomes from PACE/GET are due to the effect of pacing/management rather than its true intention.

my experience of GET was that it was fine until the running bit. I stopped at that point since just the one minute of jogging was making my symptoms flare. The 3-4 months of gentle walking before that from 2 mins up to 20 mins were effectively pacing to find my energy envelope (alongside everything else). This is fine because I'm mild moderate (as will be most of the participants in PACE)

So that first 3-4 months when I got up,to 20 min walking a day I did perceive as beneficial, given that I could barely leave the house or walk to the end of my path to the gate before doing it.

This is only pacing though. It just took a long time. Perhaps other participants in the PACE study never got to the running bit either?

So it's possible that the PACE trial also confounds pacing with their original proposal for GET and this may explain the small number of patients that reported a positive outcome....or its just that they didn't have CFS in the first place?

Just something else to add to the flaws in it.

 

[Adrian]

If pointing to the PACE LTFU data, which showed GET making no overall difference for self-reported outcomes, then if assuming GET is harmful to some, presumably it's beneficial to some too?

It's not clear that there were harms in the patients that were followed up (or at least more than other groups). I think the other groups caught up with the GET/CBT groups over time. The released data didn't seem to suggest harms being recorded in the GET group. But the issue here is what is not in the data i.e. what happened to dropouts or those who didn't do the objective tests. I think drop out rates tend to be higher with GET groups in trials.

It the groups are the same it suggests that improvements/worsening is at random but if there were more good/bad extremes in GET that may say something interesting but that would be hard to conclude given missing the data.

 

[Esther12]

I think drop out rates tend to be higher with GET groups in trials.

Analysis 1.18 of the Larun Cochrane review for exercise therapy reported no significant difference, but I haven't gone through looking at the details:



Edit - anyone know why Wearden 1998 has more weight than Wearden 2010 in the above graph?

 

[MeSci]

If the data are all based on bad methodology then the most we can conclude from LTFU is that the outcome is neutral.

Can someone tell me what LTFU is? I keep thinking 'long-term f***-up'.

 

[Andy]

Can someone tell me what LTFU is? I keep thinking 'long-term f***-up'.

Long Term Follow Up, though in many cases your version may be more accurate.

 

[MeSci]

Long Term Follow Up, though in many cases your version may be more accurate.

LOL - thank you!

 

[Esther12]

Edit - anyone know why Wearden 1998 has more weight than Wearden 2010 in the above graph?

For anyone interested, there's introductory info on the weighting of studies in meta analyses here (found via google, so sorry if it's BS): https://www.meta-analysis.com/downloads/Meta Analysis Fixed vs Random effects.pdf

I think I understand it more... but also, it's added a whole extra layer of stuff that can go wrong, and there are bits I'm still really unsure on and don't want to think about. I don't really understand why higher variance should lead to results being given so much less weight, especially for studies of a condition like CFS.