MEGA research for M.E./CFS: White & Crawley listed as involved

Cheesus

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Exactly. To study the full spectrum, it would be necessary to study everything from bedridden extremely ill from mildly ill. That means actively seeking out the severely ill, because at NHs clinics you're not going to find them.

Broad criteria don't guarantee that the full spectrum will be represented.
When it comes to the stage that they begin to recruit patients, I will probably write to my local clinic to see if they can involve me as I am at the severe end of the spectrum. Perhaps we could encourage other severely affected patients to do the same in a bid to ensure that the 25% who are supposedly house/bed-bound actually account for 25% of participants.
 

BurnA

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That's just a non-answer. Even if there is justification for psychiatrists to be involved (and that's a big if), it shouldn't be the BPS crowd. We have been told how lucky we are to have scientific researchers coming in who are new to ME. Why doesn't that luck extend to having psychiatrists involved who are new to ME?
Indeed, I don't recall Ron Davis, Ian lipkin or Maureen Hansen having psychiatrists on their teams but I could be wrong.
You'd wonder how they mange to do so much research without them.
 

Cinders66

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A question from me is how much is this about getting lots of really good data about the ME sick which will really inform ME/CFS science and how much is this a subgrouping of CF study based on that stubbornly held uk top dog belief that the CFS umbrella is unrefinable without biomarkers?

If the latter The cynic in me could see this as yet more procrastination as we have to wait 5 years in limbo before anything like M Es recognised and researched in U.K. or...Therefore that is why it's only in 2022 that M E biomedical research study is seriously underway. Or it could be face saving i.e. We couldn't treat you any better before ie do proper M e research because it was just a messy umbrella we couldn't subgroup without the science doing it which we have now done.
 
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Exactly. To study the full spectrum, it would be necessary to study everything from bedridden extremely ill from mildly ill. That means actively seeking out the severely ill, because at NHs clinics you're not going to find them.

Broad criteria don't guarantee that the full spectrum will be represented.
Exactly, that's my point AB. As you and @Cheesus say the danger is we will get too broad a spectrum that is too heavily weighted towards general fatigue and mildly affected as it always is.

Personally I think that is inevitable if anyone that is pro biopschosocial model is allowed to be connected with the study in ANY WAY whatsoever as they will most definitely cherry pick. It is inevitable if they use NICE/NHS guidelines which are after all PACE driven and therein amount to cherry picking. And it is inevitable if they use recently diagnosed clinic patients as that is also cherry picking given that long term and severe patients are not able to attend clinics and those that do are soon discharged with zero follow up, often for decades.

I just don't have the confidence that the current set up will allow for the appropriate selection to happen to produce a study that actually sufficiently defines all categories right through to very severe ICC ME which must include PEM/PENE as a cardinal symptom.
 

paul80

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When it comes to the stage that they begin to recruit patients, I will probably write to my local clinic to see if they can involve me as I am at the severe end of the spectrum. Perhaps we could encourage other severely affected patients to do the same in a bid to ensure that the 25% who are supposedly house/bed-bound actually account for 25% of participants.
I think severe patients have been harmed enough by these people, we should strongly discourage anyone from participating.
 

A.B.

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We will collect sufficient information on each patient to be able to say whether they have CFS/ME using other research diagnoses (for example, the CDC [Fukuda 1994] diagnostic criteria, the IACFS criteria, Canadian criteria and so on). This is in addition to the diagnoses of CFS/ME that patients will get following NICE guidance. We will listen to our patient advisory group in terms of how much data we can collect on different diagnostic criteria. Our patients advisory groups may recommend collecting less data as patients are so ill.
Patient advisory groups might be able to restrict how much data is collected.

Also: by recruiting from NHS clinics, they are implicitly using NICE criteria, and only then will they (maybe) check for other criteria. The same mistake was made in the PACE trial.

We will collect symptom data on all patients to allow us to identify which patients will be identified as having CFS/ME using different diagnoses. We will also include data on fatigue, disability, anxiety and depression. We would like to collect detailed data on pain. How much data we collect will depend on what our patient advisory group says will be acceptable to consenting patients and how much funding we get.
No data on PEM? Patient advisory groups given the power to restrict data collection again.

We would like to do additional, more time-consuming and expensive tests on a sample of patients that will help us more finely phenotype (describe CFS/ME more carefully) those recruited into the study. We don’t think we will have the money to do this for everybody or for everything. We would like to do additional studies to collect more data on pain, exercise-induced stress and sleep studies and possibly some imaging. We also want to be as sure as we can that we have carefully excluded other diagnoses such as depression and anxiety as a cause of fatigue. We haven’t worked on the details for this but will be asking our patient advisory group about what they think would be feasible and acceptable given the funding limits.
It's called PEM. Once again patient advisory groups given the power to restrict data collection.

We have not been given details on how this patient advisory group will be formed, but presumably they will be associated with AFME and AYME which somehow have a close relationship to the Wessely school. So the current plans contain what could be a backdoor to insert Wessely school bias into this study and prevent collection of data or tests that do not fit their agenda. Apologies if I'm not enthusiastic.

Wasn't it AFME that OK'ed dropping actometers from the PACE trial?

PS: MEGA team if you're reading this, I very much appreciate your 'omics efforts but you're collaborating with the wrong people and are being misled and/or poorly advised on key issues. The extreme neglect of ME/CFS and lack of treatment is a direct consequence of the Wessely school, and many patients are never going to support anything in that direction.
 
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MEMum

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I think I saw somewhere that Mady Hornig is a psychiatrist.
Yes, but one who looks at physiological changes with psychiatric symptoms.
One of her early talks to the Invest in ME conferences was on PANDAS a motor tic condition in youngsters. ?2013/4.
The tics are often linked to the production of autoantibodies following a strep infection. These are antibodies to receptors in the basal ganglia in the brain.
From her subsequent talks to the conference you would not guess she is a psychiatrist. Her talks and research are much more biomedical.
 

MEMum

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I was particularly interested in this, because my daughter regularly has high ASO titres (antistreptolysin). This is a measure of ongoing strep infections.
She has also had a positive test for autoantibodies to the pyruvate kinase receptors in the basal ganglia of the brain.
She has no motor tics. These receptors seem to be involved in cognitive function, in the cortico-thalamic loops.
On certain antibiotic regimes she has shown significant improvement in cognitive function and stamina for several months, but this is not sustained when the antibiotics are discontinued. At these times of improvement her ASO levels also decrease.
 

Kati

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@charles shepherd may not be able to discuss why the involvement of White, Crawley and other dubious psych lobby team members.

He may not even be at liberty to criticize the PACE trial and highlight the fact that these folks are not in to apologize or even recognizing that PACE was a complete flop, a fraud and a complete waste of taxpayers money.

However involving the PACE authors to a biomedical study and strongly encouraging patients to endorse it through a petition tells me that the british psych lobby still wants a say in the design of the study and choice of cohort, and perhaps in priming the biomedical researchers on the nature of the disease, which is very, very concerning.

Moreover, the patients are still perceived as being vexatious when asking the tough questions and I believe we are witnessing people from our community protecting White and his colleagues.

It is very concerning to me.
 
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A.B.

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Thanks to everyone with a facebook account pointing out problems and asking the important questions on the petition page. I'm a little concerned that poorly informed patients, friends or relatives won't understand why people are upset though. Understanding why there is skepticism requires some special knowledge.
 
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Not everyone who wishes to Comment on AFME facebook page about MEGA or the petition, are able to do so. Numbers of the most informed patients/activists have been banned from AFME FB page over the years, for asking awkward questions, expecting answers, and requiring AFME be accountable to the ME patient population they presume to speak for.

AFME assumes a position of representation way beyond its charity membership, which is only a few thousand members.... but AFME is not very good at transparancy and accountability to either its members or the greater ME population.

.
 

Hutan

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Sigh, that response completely sidestepped the issue (the main issue as I see it) of the involvement of people who have been involved in very poor quality research, unfounded spin and the promotion of the psychogenic theory.

I think the question about how this proposed biobank relates to the existing UK biobank is a good one. It seems to be a dreadful waste of resources to operate two. I guess the BPS people want a whole lot of samples and related patient data that they alone control.
 
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I think I saw somewhere that Mady Hornig is a psychiatrist.
Yes, but one who looks at physiological changes with psychiatric symptoms.
One of her early talks to the Invest in ME conferences was on PANDAS a motor tic condition in youngsters. ?2013/4.
The tics are often linked to the production of autoantibodies following a strep infection. These are antibodies to receptors in the basal ganglia in the brain.
From her subsequent talks to the conference you would not guess she is a psychiatrist. Her talks and research are much more biomedical.
No, "Mady Hornig, MD, MA, is Associate Professor of Epidemiology and Director of Translational Research in the Jerome L. and Dawn Greene Infectious Disease Laboratory at the Mailman School of Public Health, Columbia University. A physician-scientist, she is widely recognized for her animal model and clinical research on the role of microbial, immune, and toxicologic factors in neuropsychiatric disorders..."
https://www.mailman.columbia.edu/people/our-faculty/mh2092

In my view, the problem is not the specialities of the doctors but with their false beliefs and their pervasive refusal to respect the dignity of their patients. We all recognise the good researchers and doctors who are genuinely interested in biomedical ME research.

I was recently a participant in the ME biobank project and it was so refreshing. I was never in any doubt about how much the team cared, and how determined they are to understand the pathophysiology of ME. There was no equivocation, no inappropriate language, no lack of respect, care or concern. I was treated how every patient with ME should be treated but very few are. I once phoned the lead researcher, without an appointment. She answered the phone herself and spent at least 15 minutes happily answering all my questions. At the end I tried to thank her but she wouldn't have it. "No, Thank YOU," she insisted. It was such a pleasure to be a participant in their research, and I would be amazed if they have received anything other than praise and gratitude from anyone who was involved.

Like everybody I am desperate for biomedical research to progress but I can't support MEGA unless the personnel changes – and that includes shadowy advisors.