• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Bios are up on the MEGA petition

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Problem is that the potential good elements of the study do not nullify the bad elements in the study. They simply co-exist. I am unconvinced the trade off is worth it.
I think that's the nub of it. I agree re case definition and think that's something that has to be sorted before the project progresses and is the area most likley to be affected by the lopsided selection of mecfs experts in MEGA.

But overall, this is worth it for me, primarirly because I think the biomded work on the huge sample (as well as the huge sample itself) is just what's needed to make major inroads into understading this illness, including subgroups. And also because I think closing MEGA down would harm biomedical research in the UK.

But I understand that others don't think the trade off is worth it.
 
Messages
2,391
Location
UK
I have included the full article from AYME below as it is not included on PR and in case they take it down.

Research is about coming up with a hypothesis and then trying to knock it down. Sometimes what you believe to be the case (the hypothesis) gets overturned. Long held, cherished and utterly plausible ideas are regularly demolished by evidence. This can be incredibly disappointing but you have to move on and ask the next question, not constantly keep asking the same one in the hope that eventually you will get a different answer.

This bit is completely true, and it actually vilifies PACE; it is everything PACE is not. Little did they realise how this might come back to bite them one day.

As Dr. Robert Naviaux recently said:-
Good science needs to remain open, ask the questions without bias, design good experiments, take careful measurements, then have the courage to follow the data wherever they may lead
 

char47

Senior Member
Messages
151
As expected the "Bios of the MEGA team" are very sanitised for the patient community/(cheerleaders).

I repeat this MEGA study is toxic if the:

1.Criteria not resolved
2. Involvement of Esther Crawley/Peter White not removed.
3. Other charities outside the compromised AFME and AYME alliance are not involved.

It is very simple to ensure this study is beneficial for patients but they are refusing to improve it. This is a CON!

There are huge conflicts of interests here which have not been disclosed and they have been involved with each other closely to the detriment of ME patients for years.

As previously advised this MEGA is potentially X 20 as damaging as PACE if these issues not resolved.

I agree.
I had never read AYME's reaction to PACE... that is nothing short of shocking!
 

char47

Senior Member
Messages
151
I think that's the nub of it. I agree re case definition and think that's something that has to be sorted before the project progresses and is the area most likley to be affected by the lopsided selection of mecfs experts in MEGA.

But overall, this is worth it for me, primarirly because I think the biomded work on the huge sample (as well as the huge sample itself) is just what's needed to make major inroads into understading this illness, including subgroups. .......)

But I understand that others don't think the trade off is worth it.

If sufficient numbers of properly defined ME & PWsevereME are included i agree that i think the trade off could be worth it, but without them it wont be able to actually subgroup...... But it will SAY it has done. :bang-head: In the same way that PACE purported to study 'pacing' despite APT being nothing like any pacing that patients use.
It will be a study that is touted to be the 'be all & end all' - such a huge study done by 'eminent' researchers will be held up as the last word in the uk. So imagine the fight we'll have if it includes no severe sufferers & then shows very little biomedically wrong!
I am very worried that these wonderful researchers will just accept the so called 'experts' telling them that the NHS clinics cover all the bases, how could they be expected to know otherwise. And we'll have a study that everyone(including those researchers) thinks is about us, but isnt. I dont know whether to weep or scream.