The ME Association to remain with the CFS/ME Research Collaborative

[Esther12]

In haste - as I'm working away for the next two days and am putting together all the paperwork for medical and research meetings this evening…

Thanks for that work. When you have a moment, would you be able to answer my question on the MEA, Crawley and the CMRC?

After David Tuller wrote to the CMRC to raise concern about Crawley using one of Tuller's blogs to illustrate her slide on 'anti-science' oppostion to her work and 'libellous blogs' Holgate responded by claiming that:

Prof Esther Crawley has the full support of the CMRC Executive Board in her role as Vice-Chair.

@charles shepherd : Do you and the MEA support Esther Crawley in her role as Vice-Chair?

If you don't feel that you can answer, would you be able to explain why not? Thank you.

 

[AndyPR]

The Norwegian Research Council showing the CMRC how it should be done.

http://forums.phoenixrising.me/inde...l-gpb-to-me-research.47177/page-4#post-866471

Strangely enough they have been able to engage with patients and have appreciated and acted on their input, and then funded biomedical research - what a weird way of doing things. How on earth do they expect to keep the BPS gravy train rolling if they do things like that???

 

[Esther12]

Just thought this would be relevent to this thread too:

Prof Holgate said: "Combining graded exercise therapy and cognitive behavioural therapy has undoubted benefit.

http://www.bbc.co.uk/news/health-14883651

 

[arewenearlythereyet]

I can't express myself properly on how distasteful I find that last article.

The only thing going for it is that it is 6 years old and as an ever optimist I hope that the forthcoming retirement will bury that awful point of view.

It amazes me how ignorant some academics and their cronies are

 

[Somer]

@charles shepherd

Thought I must draw your attention to the following excellent primer on diagnosis and management of ME/CFS in young people:

http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full

Discussed on the following PR thread:

http://forums.phoenixrising.me/index.php?threads/pediatric-primer.52307/

Would you mind drawing the primer to the attention of the CMRC's resident consultant pediatrician? I'm sure she'll be delighted to incorporate such a valuable resource into her broad tent approach, and as I believe she's already aware of the work of one of the authors, Dr Nigel Speight, no introductions will be necessary.

I look forward to hearing of their progress in working together for the good of young ME/CFS patients.

I've read on FB that the MEA have sent the primer to be considered as part of the NICE review. Nigel Speight is the MEAs paediatric advisor. (I hope I've got those both right).

 

[trishrhymes]

One thing that I'm confused about with the CMRC. Perhaps @charles shepherd could clarify.

I see to remember, sorry I can't find the reference, that in order to join the CMRC groups and individuals had to sign an agreement not to criticise each other's research.

Is this why the MEA twitter and website simply post links to awful research like today's latest GETSET study published in the Lancet and the Daily Telegraph piece uncritically reporting that 'Exercise can help Chronic fatigue syndrome'. Why not post with a warning, like 'not a recommendation'?

 

[AndyPR]

One thing that I'm confused about with the CMRC. Perhaps @charles shepherd could clarify.

I see to remember, sorry I can't find the reference, that in order to join the CMRC groups and individuals had to sign an agreement not to criticise each other's research.

Is this why the MEA twitter and website simply post links to awful research like today's latest GETSET study published in the Lancet and the Daily Telegraph piece uncritically reporting that 'Exercise can help Chronic fatigue syndrome'. Why not post with a warning, like 'not a recommendation'?

In the past I've seen it claimed by the MEA Facebook page that they are merely reporting on what is happening within the ME world, as if they are a news service. To be fair to them today they have amended at least one of their Facebook posts to indicate that what they have linked is not recommended by them, which, in my opinion, is what they should have been doing all along.

 

[TiredSam]

Why link to or mention it at all? The SMC has been ignoring all biomedical research for years, so why does a patient charity like the MEA feel bound to mention every piece of quackery and bullshit that happens along? It's not as if this piece of crap deserves any publicity, and the amount it gets through the corrupt offices of the SMC and the Lancet is more than enough already.

 

[Esther12]

One thing that I'm confused about with the CMRC. Perhaps @charles shepherd could clarify.

I see to remember, sorry I can't find the reference, that in order to join the CMRC groups and individuals had to sign an agreement not to criticise each other's research.

I don't think that's right. They had to sign up to a charter which had vague and problematic stuff about 'harassment' and 'organised campaigns'. It was mever made entirely clear what was and was not allowed. One concern about the CMRC is that so much seems to go on in the shadows that it's hard for patients to know exactly what influence it is having.

 

[AndyPR]

Why link to or mention it at all? The SMC has been ignoring all biomedical research for years, so why does a patient charity like the MEA feel bound to mention every piece of quackery and bullshit that happens along? It's not as if this piece of crap deserves any publicity, and the amount it gets through the corrupt offices of the SMC and the Lancet is more than enough already.

So why do we bother posting studies and articles that we don't agree with on PR? And they obviously don't mention every piece of quackery and bullshit - it just so happens that this one is featured in the UK national press. What they should do, in my opinion, is post these things that get national attention but with explanations of the flaws and issues with them, so as to help educate those people who see the post. I certainly don't agree with them sharing with no explanation.

 

[arewenearlythereyet]

it certainly feels like the MEA are pussy footing around issues rather than being clear and direct which is what a lot of people with ME need.

Its just more sitting on the fence and not being one thing or another. Quite difficult to get a feeling from them. In terms of branding they are very "grey".

Generally "grey" doesn't get much in the way of emotional investment from followers in any walk of life.

They just need to stop being so wishy washy

 

[TiredSam]

So why do we bother posting studies and articles that we don't agree with on PR?

Because until recently that's just about all there was? Now we have a choice and can spend our time and energy on the good stuff instead. But I think we agree - if it must be mentioned, make it clear that it's a pile of crap at the same time. The fact that it passes muster for the SMC and the Lancet and gets a small piece in the national press is just so much lipstick on a pig.

Wierd that the SMC, which claims to be an impartial news service but is actually a lobby group, is being mirrored by the MEA, which should be a lobby group but is acting like an impartial news service.

 

[Snowdrop]

The SMC has been ignoring all biomedical research for years, so why does a patient charity like the MEA feel bound to mention every piece of quackery and bullshit that happens along? It's not as if this piece of crap deserves any publicity, and the amount it gets through the corrupt offices of the SMC and the Lancet is more than enough already.

That is most certainly the point as I see it.
There is a bizarre sense of fairness here that looks to me a lot like a hostage trying to appease a kidnapper. So to recap: The SMC has been ignoring all biomedical research ETA: into ME

But do let's (uncritically or not) provide viewing space for complete crap that
A) is more a belief system than science
B) is a study riddled with errors of fact
C) Is not an honest investigation into treatment for this group but a management strategy where money is the bottom line
D) harms the community you're advocating for because the study refers to a vague symptom and not the illness the management being something known to be noxious to the health of already very ill people.

 

[trishrhymes]

Wierd that the SMC, which claims to be an impartial news service but is actually a lobby group, is being mirrored by the MEA, which should be a lobby group but is acting like an impartial news service.

For many years before I discovered PR my only source of information about ME research was the MEA weekly notices of the latest published research. I found it immensely frustrating to have to read the actual research papers myself (if open access) to try to work out whether they were actually useful or crap.

I would really have appreciated a quick comment from the MEA on each one,

for example:

- This is a small pilot study that points to possible factors contributing to ME. More research is needed before the conclusions can be validated.

-This is a study using a very broad definition of ME and with outcome switching making the declared results invalid.

- This study claims .... but should be read with caution because ...

- This is a promising study suggesting ... may be a useful treatment for a subset of patients. Further studies are planned.

and so on.

I know this would be a lot of work, but there are probably members of the MEA with sufficient scientific and / or medical knowledge to do this. I'd volunteer to do some of them!

My point is, as @TiredSam says, we need organisations supporting us to provide us with good information, not just be an uncritical noticeboard for anyone who publishes anything on ME, however poor quality.

 

[JohnCB]

I know this would be a lot of work, but there are probably members of the MEA with sufficient scientific and / or medical knowledge to do this. I'd volunteer to do some of them!

Why volunteer? You could just go ahead and do it. There is space for comments on the MEA website where they post the news. I have just gone in, in the past, and written my thoughts on a few in the past when I had some spare energy. However it does take time and effort, especially to do it properly. The MEA does not have much money and paid staff. It is probably a choice of posting what they see without comments or not posting the news at all. I think it would be a good thing if those of us who can do add our thoughts and criticisms of these trials on the news pages. I never tried it myself but I expect you could include a link to the PR discussion.