Petition: Opposing MEGA

[lilpink]

I think grapevine talk should stay on the grapevine.

I think where there is useful grapevine chatter people shouldn't ignore it. That's how the BPS school gets away with stuff.

 

[BurnA]

I think where there is useful grapevine chatter people shouldn't ignore it. That's how the BPS school gets away with stuff.

Sorry I disagree, to me there is no such thing as useful grapevine chatter.
Let's stick to the facts and what we know to be true.

 

[Jo Best]

To me it's irrelevant if PDW plays an advisory role in MEGA or whether we are told he will have nothing more to with it. His early involvement and the key roles played by sympathetic colleagues makes MEGA 'inevitably and irrevocably tainted' as stated in the Opposing MEGA petition. Source for quotes below - http://www.disabilitynewsservice.co...wn-their-guidance-on-preventing-wca-suicides/

A DWP spokeswoman said later that White “was involved in early discussions about the revised guidance but neither he, nor Hawton, played any subsequent role in its drafting or sign off”.

The DWP spokeswoman added: “We in no way asked either Professor Hawton or Professor White not to comment on the new guidance.

“It is for them to decide on whether they wish to engage with media.”

Remember this? http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

 

[Simon]

I'm taking some time out for the good of my own health and won't be returning to this thread, which I haven't been able to keep up with in any case.

I just want to make one final observation re the hypochondriac hypothesis: it doesn't seem to fit wtih the PACE results. That was recruited from clinics, it was a trial (hypochondriac heaven) and gave an average of 16 hours of face-to-face contact with therapists/doctors. You'd think that would make a difference. CBT seems designed for symptom-focusing hypochondriacs (you could characterise the BPS approach as working on that basis). If there was nothign really wrong with the hypochondriacs (by definition there isn't) then there's no reason why - unlike for mecfs patients - they couldn't increase actiity levels as the CBT/GET programmes aimed for. It didn't happen, and even the self-report improvements were modest despite the huge amount of medical attention. Which suggests to me it wasn't a hypochondriac cohort. But I'm afriad I won't be around for the discussion of this as I need a break.

 

[lilpink]

Sorry I disagree, to me there is no such thing as useful grapevine chatter.
Let's stick to the facts and what we know to be true.

Fine. In that case my work on PR is done. Clearly this isn't the vehicle for deeper investigative stuff.

In the meantime I hope people continue to vote for OMEGA .. of course without others having been willing to investigate we wouldn't know how skewed MEGA actually is... if a NOD scandal breaks just remember where you heard it first!

 

[Jo Best]

Fine. In that case my work on PR is done. Clearly this isn't the vehicle for deeper investigative stuff.

In the meantime I hope people continue to vote for OMEGA .. of course without others having been willing to investigate we wouldn't know how skewed MEGA actually is... if a NOD scandal breaks just remember where you heard it first!

Oh no, please don't go, I've learned so much from your posts.

 

[Chrisb]

Sorry I disagree, to me there is no such thing as useful grapevine chatter.
Let's stick to the facts and what we know to be true.

As we usually agree I do not like to seem picky, but I think that this view, were it to be adopted generally, would eliminate almost all discussion of ME.

 

[Jo Best]

I know Simon won't see this (best wishes to you Simon) but in response to his point about recruitment for the PACE trial, I gather they had to recruit beyond the clinic caseloads (perhaps because of antipathy towards the trial but nevertheless) and I read that they offered financial inducements to GPs to refer patients with chronic fatigue 'or a synonym' to be assessed for possible participation in the trial. Malcolm Hooper and Margaret Williams wrote,

The PACE trial had to assess 3,158 individuals to find 641 who met the broadest definition of “chronic fatigue” (the Oxford criteria) and who were willing to participate in the study. If the same ratio applies in MEGA, then about 60,000 people will have to be assessed to find the 12,000 said to be necessary to tease apart the presumed subgroups that fall within such a broadly defined cohort.

Source - https://opposingmega.wordpress.com/...-and-margaret-williams-comment-on-mega-study/

 

[Countrygirl]

@lilpink I interpret 'grapevine chatter' to be a possible euphemism for 'I-have-a-very-good,-reliable-source-with-a proven-track-record-who-has-to-remain-anonymous-but-wants-to alert-you-to-important-information.' I don't know if I am correct in this case, but I suspect so.

We do well to consider such information when it is posted here from a previously-proven reliable poster..

This is very different to rumour-mongering.

It is wise not to throw the baby out with the bath water.

 

[eafw]

Clearly this isn't the vehicle for deeper investigative stuff.

You're right it isn't.

This/it is a public thread on a forum where people can post their opinions, experiences, share articles and report on factual information.

No credible investigator would use such a public platform to repeat speculative "my friend heard that ..." rumours about anything this serious. A credible investigator would take the info and follow up - out of the public gaze - until they had something concrete and backed up with evidence to publish.

 

[BurnA]

As we usually agree I do not like to seem picky, but I think that this view, were it to be adopted generally, would eliminate almost all discussion of ME.

No problem, I certainly didn't mean to shut down a conversation. I just don't feel comfortable defaming someone based on grapevive chatter, when we have plenty of concrete examples which we could use instead.

Maybe it comes down to people's interpretation of grapevine chatter, yes a lot of what we discuss here could fall into a category of chatter but in this case I was thinking more along the lines of what @Countrygirl described as rumour-mongering.
If I got it wrong, apologies.

 

[eafw]

The PACE trial had to assess 3,158 individuals to find 641 who met the broadest definition of “chronic fatigue” (the Oxford criteria) and who were willing to participate in the study. If the same ratio applies in MEGA, then about 60,000 people will have to be assessed to find the 12,000 said to be necessary to tease apart the presumed subgroups that fall within such a broadly defined cohort.

One major difference is that participation in the PACE trial required a MUCH bigger committment from patients - weeks and weeks of gruelling therapy. In contrast a cheek swab takes about 30 seconds, a blood test about 5 minutes. The form-filling and assessment is a bit more of a hurdle, but IF (big if) they got themselves organised and IF they had sense to realise that getting patient groups on their side would help a lot eg with advice on the practicalities, then there is a chance of a much better take-up.

 

[Chrisb]

If I got it wrong, apologies

No need for apologies. It is a narrow line we have to walk. And this form of communication is notorious for leading to misunderstanding.

 

[Jo Best]

@eafw My thinking was leading from discussion about recruitment from the fatigue clinics instead of from primary care, as Jonathan Edwards had raised the possibility that ME patients are more likely to found via GPs than the clinics. MH and MW go on to say,

Furthermore, such a large study group severely limits the range and quality of testing that can be applied to each individual due to budgetary constraints. Even with funding of £10 million, the most that could be spent on each participant would be around £800, and most likely far less due to administrative costs.

Would a better understanding of the disease not emerge from more in-depth investigations of a smaller but better characterised cohort?

 

[Esther12]

So long as we don't confuse the claims that are clearly supported by good evidence and the ones which have just been posted as something closer to gossip, I think that's fine. Lots of useful info is shared informally through networks. Unfortunately, it is hard not to get those two categories confused unless you're very careful.

Oh no.... my desire for gossip conflicts with my desire to avoid inaccuracy!

Feel free to pm me gossip tbh.

 

[Aurator]

You'd think that would make a difference. CBT seems designed for symptom-focusing hypochondriacs (you could characterise the BPS approach as working on that basis). If there was nothign really wrong with the hypochondriacs (by definition there isn't) then there's no reason why - unlike for mecfs patients - they couldn't increase actiity levels as the CBT/GET programmes aimed for. It didn't happen.

Quite possibly the many or few hypochondriacs who were in the trial didn't increase activity levels because, in short, they're hypochondriacs, and as a consequence anything they perceived as potentially harmful to or even just incompatible with what they imagined to be their already parlous state of health was studiously avoided. Graded exercise would surely be something that would ring alarm bells with most hypochondriacs.

Similarly, CBT would presumably have been fairly unsuccessful in improving the hypochondriacs' functioning, if we are to place any value on criterion B of the definition of hypochondriasis in DSM-IV:

" B. The preoccupation persists despite appropriate medical evaluation and reassurance."

Which leaves us with the many or few genuine ME/CFS patients, who didn't improve because they were never going to improve on CBT and GET, as we can all testify.

None of us are in a position to know the overall position on how frequently, relative to patients with other conditions, genuinely sick PwME seek medical attention, and whether this frequency is proportionate to their level of functional impairment. There does, however, seem to be an appreciable body of anecdotal evidence suggesting that, except in the initial stages of their illness, genuinely sick ME/CFS patients seek medical help rather less than you would expect given their level of functional impairment. It would not surprise me if there was in practice an inverse correlation overall in PwME between functional impairment and the seeking of medical help, for reasons I discussed in an earlier post.

 

[Jo Best]

Here's an example of such anecdotal evidence posted today in a comment on the Opposing MEGA petition.
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs/c

our daugther was made far worse with brain injury,muscle problems,,dysautonomia and flu like Immune reaction & exhaustion trying to follow only 20% of graded activity targets set then couldn't read, write and bedbound for 2 years still housebound 8 years
Suzanne Spearing, Nailsea, United Kingdom
10 hours ago

 

[Jan]

Comment on Omega

The researchers involved with PACE have no business ever being involved with ME or CFS research again. They knew the trial was a sham yet attempted to hide the data from patients so that the null findings would not be known. This is serious professional misconduct that directly harms patients worldwide. Such behavior should form the basis for them being denied all funding for future research. Patients need answers but Mega will not provide it.

Neel Anne Keith, Redmond, WA
13 hours ago

 

[JoanDublin]

lilpink said: ↑
All very Orwellian I’m afraid.



Perhaps the wisest amongst us don’t subscribe to Facebook. But putting that aside, as I understand it OMEGA is not against the principle of sharing data on a massive scale but questions the trustworthiness of those who are in charge of the MEGA project and how they plan to use, and MISUSE, the data patients provide.

Eafw said

“We can, as much as we are able, expect any decent scientist to work within current ethical data guidelines and laws - and we do need to have clear statements on data protection, conflicts of interest etc - but this idea that the system will be overturned or the entire BPS network will collapse overnight if a bunch of us sign a petition saying we want rid of Crawley - that is ridiculously, hopelessly naive.”


IMO Crawley and the White/Wessely School have demonstrated that they are quite happy to

· run roughshod over data protection,

· fail to declare conflicts of interests,

· misrepresent the results from their research

· block attempts to reveal the truth

And I have heard on the grapevine that Crawley may have taken and used patient data for the NOD without informed consent so also likely flouting ethical data guidelines and laws since the NOD has now been used for their research. They have proved that they are not ‘decent scientists’, many would argue that they should not be called scientists at all. That is why we want rid of Crawley, and all BPS researcher involvement and then I’m sure patients would be perfectly happy to risk sharing their data with the wider world. Who’s being naïve?

I wonder does she or SImon Collin have all their permissions for this work? Interesting

http://www.bristol.ac.uk/social-community-medicine/people/esther-m-crawley/research.html

 

[Jan]

I am an ME patient of long-standing, desperate for a cure, and oppose MEGA due to the involvement of PACE researchers Peter White, Esther Crawley and any others, whose presence on MEGA will continue to do serious and lasting harm to ME patients, as they have already done for many decades now. Their presence on the research team calls into question the soundness, calibre and ethics of the MEGA research project, and degrades all serious researchers involved.
L B, Aylesbury, United Kingdom