The New MEGA poll

[slysaint]

As posted on a different thread:
"Simon said: ↑
For the other omics work you need much smaller samples so could easily select samples that had 50% who were ill for five years or more."

So why not start with these. Use the Biobank samples. Continue adding to the Biobank with people who have been ill for for than 5 years so you are more likely to be using ME sufferers data.
Leave the Genomics on the back burner.
Then you will be less likely to get bogged down with diagnosis criteria,(all you need to know is what diagnosis was made, when, and by whom eg GP, clinic,specialist); leave the massive questionnaires and the whole huge recruitment thing that will take years and probably use up most, if not all of the funding and largely be of interest by a select few of the 'researchers'.
Get to the real science first.

 

[Solstice]

Funny how noone said, i'll never support MEGA. Shows once more it's not about MEGA, but about the wrong people getting their fingers in it.

 

[AndyPR]

Well, that story was only believed by anybody who convinced themselves of the excessive militancy of the patient body. Mind you, the events of the past week has shown us that Holgate is obviously signed up to the BPS party line, so for me the only real way I could support MEGA is if it was restricted to the biomedical scientists, ME A, ME Research (and preferably find a way to get IiME on-board) being involved, and we all know that ain't going to happen.

 

[Chrisb]

There may be another question which has become increasingly more relevant since this poll was posted. No criticism of the original poll intended.That is the recruitment of a specialist (or preferably a genuine expert - it has become clear that one can be a specialist without possessing expertise) on adult ME with general responsibility.

So far as one can tell Crawley can claim no expertise on adult ME, which she considers to be something different to juvenile ME. White is supposed to have withdrawn from the fray, unless I have misunderstood his intentions. I do not question the expertise of the others within their own fields, but there is nothing to suggest sufficient experience of the condition which represents 5/6 of the proposed study, to enable them to oversee a multi million pound study of many years duration.

Yesterday's High Court ruling on the Waney Squier case is instructive. "She had failed to work within the limits of her competence, to be objective and unbiased, and pay due regard to the views of other experts." But that is presumably only the standard required of a doctor.

 

[AndyPR]

Anybody else not voted and want to express an opinion?

 

[AndyPR]

I just added an Other to my votes, which would be to remove Holgate, as there is no way I can trust him now after recent events.

 

[daisybell]

I just changed my vote to include 'other' - being the removal of Holgate....
I'm absolutely disgusted by what's been going on.

 

[AndyH]

I'd also like Holgate removed. Marked other.

 

[Solstice]

Agreed with that.

 

[slysaint]

Looking at the 0% who have voted for question 2

Having read Keith Geraghtys post.............

 

[trishrhymes]

After the recent FITNET media blitz by Crawley including her praise of PACE, the public support of FITNET by Holgate as 'good science', and Keith Geraghty's revelations about the appalling behaviour of CMRC to him including harassment, I cannot support MEGA until and unless Crawley, Holgate and any BPS supporters are removed completely from it. Since it seems Crawley is actually to head the research project, this simply won't happen.

 

[Jan]

After the recent FITNET media blitz by Crawley including her praise of PACE, the public support of FITNET by Holgate as 'good science', and Keith Geraghty's revelations about the appalling behaviour of CMRC to him including harassment, I cannot support MEGA until and unless Crawley, Holgate and any BPS supporters are removed completely from it. Since it seems Crawley is actually to head the research project, this simply won't happen.

I completely agree, I feel disgusted and insulted by Holgate's support of Fitnet. I find it quite shocking that in the face of the lies about PACE, he supports a similar study in children.

How many more children will be damaged by this, possibly for life? They seem to not care in the slightest about patients being harmed. Week after week, year after year, we keep hearing about both adults and children being made permanently worse by the BPS approach. How long must this continue, how much longer will they ignore the suffering?

 

[FredaF]

The other major problem with MEGA is the symptoms that they say they are interested in aren't those of ME-ICC or ME/CFS-CCC....eg PEM, sore throats, glands, headaches....instead its stress, depression....

 

[FredaF]

Opps - the study would need to measure orthostatic intolerance, heart rate abnormalities on exertion, resting heart rate, temperature, maybe use the rhomberg test, establish the physical functional capacity of entrants (Maybe by 2 day CPET, where possible) maybe by oxygen usage, or on the disability scale. Use of the DePaul Questionaire or similar ie a genuine attempt to understand and glean as much information about ME/CFS. Also why isn't the existing biobank that has 500 well characterised samples being extended??? Charity wise Invest in ME has never let us down to date. MEAssociation has been good although its early support of MEGA and CMRC is a worry- has it flipped???

 

[FredaF]

Thanks for setting up this poll. May I suggest adding the option "Patient involvement through several representatives chosen by all notable UK charities".

I'm not sure how "direct patient involvement " would work.

"notable UK charities" - is undefined. Invest in ME has severed us extremely well as have the Tymes Trust and 25% severe ME... Whereas AfME and AYME are harmful and linked to the bps people.

 

[Solstice]

Opps - the study would need to measure orthostatic intolerance, heart rate abnormalities on exertion, resting heart rate, temperature, maybe use the rhomberg test, establish the physical functional capacity of entrants (Maybe by 2 day CPET, where possible) maybe by oxygen usage, or on the disability scale. Use of the DePaul Questionaire or similar ie a genuine attempt to understand and glean as much information about ME/CFS. Also why isn't the existing biobank that has 500 well characterised samples being extended??? Charity wise Invest in ME has never let us down to date. MEAssociation has been good although its early support of MEGA and CMRC is a worry- has it flipped???

Maybe @Jonathan Edwards or @Keith Geraghty can answer me this, aren't 500 samples more than enough for decent research to be done?

 

[Jonathan Edwards]

Maybe @Jonathan Edwards or @Keith Geraghty can answer me this, aren't 500 samples more than enough for decent research to be done?

Certain sorts of studies may need 1000 or more samples - chiefly genetics because of the high chance of false positive 'hits'. But a lot can be done with 300. I agree that it seems hard to justify setting up a new Biobank when we already have one that is being underused and which is designed to expand depending on re-investment from projects that use the material. We have exactly the system we want in place but MEGA seems to be ignoring it.

 

[Keith Geraghty]

I am with J. Edwards - the CMRC make very little mention of the Biobank that is already established and up and running - wouldnt it be better to develop something that exists, that will hold many hundreds to thousands of samples that are accessible to all researchers, rather than promote MEGA, a trial we know little about.

No matter what the size of the sample, big or small, the research question should direct the study design and then the methodology - big can only mean better if we get those things right from the get-go.

Whether its genomics, epigenetics, or proteomics, we need to know what we want to do and why? Fishing is fine, Im all for blind searches of large samples - but there are risks with this too.

I fully support the Biobank and the work they are doing - Im still to be convinced by anything Ive seen regarding MEGA.

 

[Solstice]

Thanks for the quick and illuminating answers.

 

[FredaF]

I like the idea of classifying the patient as
Patient A, meets entry criteria: PEM,IOM,ICC, CCC
Patient B, Meets entry Criteria: CCC Only.

So we start to see the difference of PEM and no PEM patients on publish studies. Also the CCC vs IOM data.... If one of the Criteria fall the data can be reanalyzed with no mayor cost.

Yes and it wouldn't be hard, this is what the NCNED did.