Article about ME/PACE for British newspaper - what do you want included?

[harveythecat]

Hi everyone. Please could you help me with a few things?

I'm trying to find a source for some of the facts provided by ME Action/ Millions Missing. Specifically that 75-85% of pwme can't work and only 5% recover. Does anyone know where these figures come from?

Also:

. What is the best source to use to show the potential harms of GET? I know of the ME Association survey.

. I have linked to the study about 'Health-Related Quality of Life' http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

Can anyone think of useful illustrations backed up by a scientific source. E.g. "people with ME can't walk as far as people with chronic renal failure?" or anything else to demonstrate to the public HOW ME is worse?

Many thanks

 

[worldbackwards]

only 5% recover

Canadian Gudelines are a good source for something along these lines. This is on Page One:

ME/CFS can be debilitating. In a review study of prognosis, 5 of 6 studies indicated that 0% to 6% (the sixth study indicated 12%) of adults return to their pre-illness level of functioning.

http://mecfswa.org.au/UserDir/Documents/canadian_consensus_overview_me_cfs.pdf

 

[Esther12]

5% recovery rate is probably from this: http://www.ncbi.nlm.nih.gov/pubmed/15699087

Hard to get reliable figures on this though.

 

[worldbackwards]

Hard to get reliable figures on this though.

Given that that was post the CCC review, it does look remarkably similar.

 

[Hilary]

It's obviously very difficult to get everything that we might wish to get across into 700 words - and that is reflected in the number of responses to this thread. I agree with @Esther12 that the PACE authors don't respond to any substantial criticism of their work, hence the deafening silence following the arguments set out by David Tuller, the letters to the Lancet from the group of scientists and also Prof Malcolm Hooper etc. However, such a short piece clearly needs to be focused and there is a risk that there will not be enough space to make a proper case against PACE - with the result that it just comes across as a bit of a whinge or side-swipe by irritated and maybe slightly unstable patients.
Maybe we should fund raise for a full page spread so we can really make the argument...

 

[Snowdrop]

My point re PACE is that they do not respond to the substantive issues/criticisms brought against PACE. They do follow what is said then attack after anything is written about PACE with their own spin independent of any response they just regurgitate their erroneous position in mass media for public consumption over and over. Each criticism will often set off this response.

 

[Esther12]

Each criticism will often set off this response.

What mainstream criticism of the PACE trial has been bad for us, or led to a response that was harmful?

The PACE researchers were spinning about unreasonable militant patients from the get-go, and they've largely been able to define patient criticism of PACE on there own terms because no mainstream publication has been willing to detail our legitimate concerns. I really don't see how the history here could lead to anyone thinking that having a mainstream venue to provide a careful and well researched piece about our concerns of the PACE trial the behavior of the PACE researchers would back-fire.

 

[mango]

I'm trying to find a source for some of the facts provided by ME Action/ Millions Missing. Specifically that 75-85% of pwme can't work [...]. Does anyone know where these figures come from?

perhaps from this one?

http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/

 

[Comet]

Can anyone think of useful illustrations backed up by a scientific source. E.g. "people with ME can't walk as far as people with chronic renal failure?" or anything else to demonstrate to the public HOW ME is worse?

@Bob had a great graph showing results of the six minute walking test for people with different diseases. I think it also showed there was not much improvement after PACE intervention. And maybe no significant difference between the different PACE arms. I'm not use how to find it though.

Cort wrote an article showing how poor our quality of life is vs other diseases. I can take a look for that and edit in the link if I find it.

Edit: Here's the quality of life article.
Was on a tablet when I originally posted this and was tricky to look up the articles.
Edit #2: Here's a different one I found by Cort. 25% of Patients Housebound.

Edit #3: Here's is the Six Minute Walk Test graph that Bob posted.

 

[Bob]

Edit #3: Here's is the Six Minute Walk Test graph that Bob posted.

Here's my latest version...
http://forums.phoenixrising.me/inde...pace-trial-protocol.3928/page-138#post-723529

 

[Cheshire]

perhaps from this one?

http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/

Beware of the meaction article because it quotes only part of the numbers of the study it refers to, (from memory there were comparision between 4 groups and they cite only the outcomes of the worst group) so a bit misleading IMO.

 

[Cheshire]

@harveythecat In the Meaction article, they say "Only 13.5% of patients are able to work. This figure includes patients who work part-time."
But this is only true for the De Paul sample. "13.5% reported working full-time or part-time"
In the Newcastle Sample: " 37.5% of participantswere working full-time or part-time"
The Norway I sample: "only 9.7% of participants reported that they were working"
The Norway II sample: "19.0% reported they were currently working."

http://sci-hub.cc/10.1177/1742395316644770

 

[harveythecat]

@harveythecat In the Meaction article, they say "Only 13.5% of patients are able to work. This figure includes patients who work part-time."
But this is only true for the De Paul sample. "13.5% reported working full-time or part-time"
In the Newcastle Sample: " 37.5% of participantswere working full-time or part-time"
The Norway I sample: "only 9.7% of participants reported that they were working"
The Norway II sample: "19.0% reported they were currently working."

http://sci-hub.cc/10.1177/1742395316644770

Right I see - thanks for that! not too surprised that there is variability tbh. I've been told on Twitter that the 75-85% comes from a new study by Lenny Jason, but not got a citation for it yet... I think CDC says 75%

 

[mfairma]

To add to what I wrote before, part of the problem with trying to appeal to the public, I think, is that we already have little to no credibility. Our facts are already suspect, to some degree, if you don't explain in some respect why the dominant narrative is wrong. I think there is a need to go on offense, without mentioning names.

 

[Bob]

What is the best source to use to show the potential harms of GET? I know of the ME Association survey

Tom Kindlon's paper summarises survey results from various countries...

Kindlon T. (2011) Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bull IACFS/ME 19:59–111.
Abstract:
http://iacfsme.org/ME-CFS-Primer-Ed...of-Harms-Associated-with-Graded-Exercise.aspx
PDF:
http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk=


And this paper discusses similar issues...

Twisk FN, Maes M. (2009) A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 30:284-99.
http://www.ncbi.nlm.nih.gov/pubmed/19855350



The Light's research, that shows cytokine and epigenetic abnormalities after exertion, might be good references to include.

White AT, Light AR, Hughen RW, Bateman L, Martins TB, Hill HR, Light KC. (2010) Severity of symptom flare after moderate exercise is linked to cytokine activity in chronic fatigue syndrome. Psychophysiology. 47:615-24.
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8986.2010.00978.x/abstract

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. (2012) Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 271:64-81.
http://www.ncbi.nlm.nih.gov/pubmed/21615807
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02405.x/abstract

 

[Bob]

I've been told on Twitter that the 75-85% comes from a new study by Lenny Jason, but not got a citation for it yet... I think CDC says 75%

I think it might be this one...

perhaps from this one?
http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract

 

[BurnA]

I am getting apprehensive about adding more opinions to this thread because it might end up confusing the author @harveythecat .

I think this is a good thread though just to see everyone's opinion on this matter and see the different views.

Therefore any more of my comments aren't really advice, more what I would consider if it were me.

Regarding the explanation of the harms of exercise, that's a tough task. Possibly our most significant mountain to climb in terms of overcoming PACE. Generally healthy people have absolutely no comprehension that exercise could be bad for some people - it's almost a universal understanding that exercise is good for you.

To suggest exercise is bad for ME patients without good clear scientific evidence will appear like crazy talk to a healthy person.
It's definitely a worthwhile endeavor but also a big challenge I imagine.

 

[Comet]

Right I see - thanks for that! not too surprised that there is variability tbh. I've been told on Twitter that the 75-85% comes from a new study by Lenny Jason, but not got a citation for it yet... I think CDC says 75%

There's a link to the Lenny Jason abstract in the article by Cort I referenced in my post above.
25% Housebound

 

[Kyla]

For explanation of null results / what was wrong with the PACE follow-up try:

http://keithsneuroblog.blogspot.ca/2015/11/song-for-siren.html

http://blogs.plos.org/mindthebrain/...ace-chronic-fatigue-syndrome-follow-up-study/

http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
(peer-reviewed journal article)

for harms of GET, this is a good summary of all the exercise findings:

http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf


Hope you are not getting too overwhelmed by this thread @harveythecat

 

[Kyla]

Can anyone think of useful illustrations backed up by a scientific source. E.g. "people with ME can't walk as far as people with chronic renal failure?" or anything else to demonstrate to the public HOW ME is worse?

Many thanks

IOM report might be a good respectable source, eg.:

"Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease (Jason and Richman, 8 Ibid. 9 Ibid. Copyright © National Academy of Sciences. All rights reserved. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness 32 BEYOND ME/CFS 2008; Twisk, 2014). Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms. "