Artical on fresh evidence on CFS that appeared in Pharmaceutical Journal today

[Invisible Woman]

Fresh evidence points to a cause and possible treatments for chronic fatigue syndrome

http://www.pharmaceutical-journal.c...edium=email&utm_source=Pharmaceutical Journal

Warning: Does contain some of the usual PACE guff

 

[Roy S]

From the article:
"In addition to the trial with rituximab, the team at Haukeland is conducting a trial using the chemotherapy drug cyclophosphamide. Fluge treated three CFS/ME patients with breast cancer using cyclophosphamide, after which they had remission of their CFS/ME symptoms. A 40-person open-label trial is now underway, with the results expected to be published in January 2017, he says."

 

[worldbackwards]

Miller, who was involved in reviewing the adverse events data in the trial, says “a bunch of people are very against [CBT and GET] and it’s really demoralising”.

Poor you.

 

[Bob]

Interesting article. If annoying in places.

Pete Gladwell, a physiotherapist, leads the Bristol CFS/ME service. He explains that both CBT and GET aim to stabilise a patient at a baseline of activity before gradually trying to improve. “The important thing with CFS/ME patients is that there is the possibility of full or partial recovery … but there is debate about how to define this,” he says.

Yes, one side of the debate says 'recovery' should represent an improvement in health and a return to ordinary activities, whereas the other side of the debate says that 'recovery' should represent a deterioration in health after treatment and severe physical impairment.

In a two-year follow up of the PACE study, published in Psychological Medicine, researchers said recovery was 22% in both the CBT and GET arms, compared with 8% for adaptive pacing therapy and 7% for specialist medical care[8]. But this research, Collin says, provoked “a flurry of angry responses from patient groups“, which dispute the criteria used to judge recovery.

Hmm.. I can't imagine why there were a flurry of angry responses from patient groups when deterioration was mislabelled as "recovery"! These patient groups are soooo boring and pernickety about details sometimes!

 

[worldbackwards]

Simon Collin, a researcher at the University of Bristol who examines outcomes data for CFS/ME patients who access NHS services, says the national outcomes data “roughly reflect” the results of the PACE trial.

Doesn't this contradict the research that said that outcomes were worse in a clinical setting? And what does this mean exactly? That after 2.5 years they were no better than having had no treatment? Or aren't we mentioning that? Again.

 

[Bob]

Simon Collin, a researcher at the University of Bristol who examines outcomes data for CFS/ME patients who access NHS services, says the national outcomes data “roughly reflect” the results of the PACE trial.

The large study (see below) by Collin, and his colleague Crawley, of clinical settings in England found CBT & GET had worse outcomes in clinical settings than in the PACE trial. Importantly, there were no significant improvements in (self-report) physical function after treatment...

Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT.
QJM. 2013;106:555-65.
http://www.ncbi.nlm.nih.gov/pubmed/23538643
http://forums.phoenixrising.me/index.php?threads/treatment-outcome-in-adults-with-cfs-a-prospective-study-in-england-based-on-the-cfs-me-nod.22583/

 

[user9876]

Interesting article. If annoying in places.


Yes, one side of the debate says 'recovery' should represent an improvement in health and a return to ordinary activities, whereas the other side of the debate says that 'recovery' should represent a deterioration in health after treatment and severe physical impairment.


Hmm.. I can't imagine why there were a flurry of angry responses from patient groups when deterioration was mislabelled as "recovery"! These patient groups are soooo boring and pernickety about details sometimes!

I thought the way the recovery piece was phrased was strange by starting it with a 'n a two-year follow up of the PACE study, published in Psychological Medicine, ' they appear to be confusing the long term followup paper in the lancet with the recovery paper. Or perhaps they are just saying it took them two years to find a definition of recovery that let them claim success.

What really strikes me is that Miller and Collins appear happy to put opinions into patients mouths without bothering to understand what is being said or reading the criticism. Or worse is they are knowingly misrepresenting the facts. Either way is bad. If people like Collins doesn't understand the substance of the criticism of PACE how can he properly assess stats from other similar studies. Perhaps his comment that his BACME study had roughtly the same results as PACE was more due to seeing movements in only subjective measures.

In saying CBT is used for cancer Miller shows he really hasn't understood the nature of what is being proposed in PACE and the criticism. Or is just choosing to mislead the journalist.

However, I thought the journalist had clearly tried to do a good job talking to a range of different people including Fluge and Mella who always come across as very good and careful in what they say. Its just obvious that there is a group of people involved with CBT and GET in the UK who will keep twisting their message to keep their beliefs.

 

[Kalliope]

However, I thought the journalist had clearly tried to do a good job talking to a range of different people

Agree. It is not often I´ve seen such effort put down in research to an article on ME. I hope the journalist will consider adding a bit on why the PACE-trial is so controversial. I see several have commented on this on Twitter to the journal.

Also, the shutterstock image to illustrate ME was rather good!

 

[Hutan]

From the article

After managing to secure some money from the NIH, researchers at DePaul University, Illinois, are hoping to study 6,000 students at Northwestern University in a bid to see who develops CFS/ME and understand the reasons why. “They know 600 will get glandular fever and about 60 will not recover,” says Collin.

First I have seen of this; presumably I have missed it being discussed here?

I think prospective studies have the potential to be very helpful.

 

[barbc56]

Hmm.. I can't imagine why there were a flurry of angry responses from patient groups when deterioration was mislabelled as "recovery"! These patient groups are soooo boring and pernickety about details sometimes

Really, the nerve.

By PACE's definition of recovery, I just keep getting better and better!

@Hutan

I had not heard of the prospective studies either. That's very encouraging.

 

[Comet]

By PACE's definition of recovery, I just keep getting better and better!

 

[Bob]

What really strikes me is that Miller and Collins appear happy to put opinions into patients mouths without bothering to understand what is being said or reading the criticism.

Yes, and that was a weakness of the journalism; the journalist (as is typical) didn't seek opinion about the research evidence and politics from the people who are at the receiving end i.e. patients and patient representatives.

 

[Marky90]

Montoya feels ritux-results supports the inflammation hypohesis?. How exactly? Not even gonna care about the psychobabble turds.

 

[Marky90]

Awesome that the cyclo resutls are expected jan 2017, i thought we didn`t get them before fall 2017. Also glad to see that Fluge&Mella understands the potential pivotal role of pathogenic plasma cells. that gets me hoping that they might be planning drug regiment-trials.