Petition: Opposing MEGA

[Valentijn]

Is a "phenotype" genetic or behavioural? I had assumed it was genetic and was unaware that she had done any research or testing in in this area.

A phenotype can be the observable expression of the genotype. But it can also be connected to other factors, such as behavior. Biopsychosocial (BPS) proponents have been paying lip service to physical symptoms since the beginning ... they simply claim that any observable changes to phenotype in patients (such as low blood pressure) are due to their behavior, and the impact of their cognitions upon their behavior.

So BPS "researchers" nattering on about severe physical symptoms and the investigation of phenotypes is not indicative of a biomedical approach. It's just a duplicitous tactic to placate patients and sound less ridiculous.

 

[A.B.]

Esther Crawley is a delusional quack.

Speaking ot that. During the recent radio interview she spoke very rapidly without pauses.

Pressure of speech is a tendency to speak rapidly and frenziedly, as if motivated by an urgency not apparent to the listener. The speech produced, sometimes called pressured speech, is difficult to interrupt.

Pressure of speech is a hallmark of mania and is often seen during manic periods in patients with bipolar disorder. The pace of the speech indicates an underlying thought disorder known as “flight of ideas” wherein the flowing of ideas and information through one's mind is so fast that it is difficult to follow their train of thought.[2]

Psychostimulants such as cocaine, amphetamines may cause speech resembling pressured speech in individuals with pre-existing psychopathology and produce hypomanic or manic symptoms in general, owing both to the substance's own qualities and the underlying nature of an individual's psyche. In many psychotic disorders, illicit drug use amplifies certain expressions of symptoms, and stimulant-induced pressured speech is among them.

https://en.wikipedia.org/wiki/Pressure_of_speech

Cocaine or untreated mania? Either would be a nice explanation for the behaviour of the CBT/GET/LP pushers.

 

[trishrhymes]

Although I may be in the minority on this forum I think the MEGA study has a lot of potential to help M.E. patients, as long as patient selection criteria, co-morbidities and exclusion criteria are properly defined. If it could find biomarkers that are diagnostic for M.E. and split people with M.E. into various subgroups based on the causes of their illness, this would be major progress.

Hi Jodie, I don't think you're necessarily in a minority. I think we all want really good biomedical research. Maybe it's more a case of emphasis. You say you support MEGA 'as long as....'.

Many of us say we don't support MEGA because of precisely these same things. We are concerned that these issues of patient criteria etc. are not being addressed.

I am concerned that all they are promising at the moment is a biobank and database which may or may not ever be used, with too broadly defined patients, so they are useless for international comparisons, and with lots of questionnaire data for Crawley and her pals to play with to reinforce her unfounded theories and to our detriment. I'd love to be proved wrong.

I'll now go away and shut up. I've been too vocal in here in the last hour. I'm getting annoying.

 

[TreePerson]

A phenotype can be the observable expression of the genotype. But it can also be connected to other factors, such as behavior. Biopsychosocial (BPS) proponents have been paying lip service to physical symptoms since the beginning ... they simply claim that any observable changes to phenotype in patients (such as low blood pressure) is due to their behavior, and the impact of their cognitions upon their behavior.

So BPS "researchers" nattering on about severe physical symptoms and the investigation of phenotypes is not indicative of a biomedical approach. It's just a duplicitous tactic to placate patients and sound less ridiculous.

Thanks. I had looked it up but I was finding it difficult to get my head around and to understand what this might mean in the context of Crawley and ME. But I think what you are saying is that if for example a dauer type state was observed as a phenotype, she would attribute it to the effect mental attitudes and deconditioning have on the body etc. Do we know what the phenotypes are that she thinks she has found in adults and children? I completely agree btw that she is not to be trusted. I am new to all this (though not sadly to ME) and came to it with an open mind. But just hearing her speak on the day the FITNET was announced on the BBC was enough to put me off forever. I know a self-serving manipulative politician when I hear one.

 

[Valentijn]

Do we know what the phenotypes are that she thinks she has found in adults and children?

I doubt Crawley has actually looked for phenotypes. She completely ignores PEM as a diagnostic entity, and probably just ignores everything else which doesn't fit into a psychosocial framework as well. That would include ignoring most subjective symptoms and all objective signs of impairment or disease.

So I really think the talk of phenotypes just comes down to a superficial attempt to placate the patients, while still being vague enough to stay true to the psychosocial model.

 

[jodie100]

Please can you direct me to these articles? Is a "phenotype" genetic or behavioural? I had assumed it was genetic and was unaware that she had done any research or testing in in this area.

Hi, TreePerson, I have linked to the articles I was referring to below. They are to do with symptom-based phenotypes, which I would hope might provide a useful starting point for further analysis or genetic findings or the development of subgroups of patients. The biography for Professor Crawley on the MEGA website says she has a background in genetics and is interested in researching the genetics and the different types of M.E.

* CFS symptom-based phenotypes in two clinical cohorts of adult patients in the UK and the Netherlands http://www.jpsychores.com/article/S0022-3999(15)30028-3/abstract

* Phenotypes of CFS in children and young people https://www.ncbi.nlm.nih.gov/pubmed/19843509

 

[user9876]

Hi, TreePerson, I have linked to the articles I was referring to below. They are to do with symptom-based phenotypes, which I would hope might provide a useful starting point for further analysis or genetic findings or the development of subgroups of patients. The biography for Professor Crawley on the MEGA website says she has a background in genetics and is interested in researching the genetics and the different types of M.E.

* CFS symptom-based phenotypes in two clinical cohorts of adult patients in the UK and the Netherlands http://www.jpsychores.com/article/S0022-3999(15)30028-3/abstract

* Phenotypes of CFS in children and young people https://www.ncbi.nlm.nih.gov/pubmed/19843509

They are really just clusters based on a chosen set of symptoms. They have no underlying model to say they chose the right symptoms or signs or that these clusters represent something interesting from a mechanism perspective. If I remember correctly they don't account for severity or the way symptoms can fluctuate and change over time. Hence it may be possible for people to move between groups.

 

[TreePerson]

Hi, TreePerson, I have linked to the articles I was referring to below. They are to do with symptom-based phenotypes, which I would hope might provide a useful starting point for further analysis or genetic findings or the development of subgroups of patients. The biography for Professor Crawley on the MEGA website says she has a background in genetics and is interested in researching the genetics and the different types of M.E.

* CFS symptom-based phenotypes in two clinical cohorts of adult patients in the UK and the Netherlands http://www.jpsychores.com/article/S0022-3999(15)30028-3/abstract

* Phenotypes of CFS in children and young people https://www.ncbi.nlm.nih.gov/pubmed/19843509

Thank you for replying. I have read the first one and the fact that it appears in the journal of psychosomatic research is immediately off-putting.
It didn't strike me as interesting at all. It was very basic and I can't imagine anyone who has had a serious interest in ME research finding it remotely enlightning. No one with ME has only one symptom. You don't need a phenotype study to tell you that. So it does indeed suggest that she is conflating miscellaneous and probably relatively minor fatigue states with serious illness. Probably in the hope of finding a group who do have psychosomatic illness and who she can justifiably treat. But it confirms my feeling that she is not the right person to be researching ME. And that a lot of time and money may be wasted that could be spent helping the very seriously ill.

 

[Snowdrop]

I don't personally view Professor Crawley's involvement in the study as a cause for concern, irrespective of disagreement with some of her treatment recommendations for CFS. She would be one of a large group of scientists in MEGA who are all aiming to find the causes of M.E. based on replicable biomedical research, and I think she could contribute a lot of useful information on M.E. that many of the other scientists may not be aware of e.g. she has written interesting articles on CFS phenotypes in adults and children, has had a good article in the New Scientist recently and her colleague Dr. Hammond has had an excellent article in Private Eye.

From reading your post it seems to me that you take whatever is said by the BPS crowd at face value. I think that is a mistake.

Esther Crawley knows very well that if she had said what Hammond said that very few would believe her. But we have less knowledge of Hammonds opinions on ME so that the BPS crowd can get him to write something that sounds somewhat reasonable on the face of it on their behalf to bolster their credibility. They may not like having to allow for the concessions made regarding the illness but they are desperate and they are staring at the abyss of irrelevance while other researchers do real work. PACE has failed. So now they impose on their colleague Hammond to present a reasonable front in an attempt to calm any concerns that BPS bias will affect the MEGA research.

They lie.

Do not be fooled. The funding, should they get it will only be first stage funding. It will cover the cost of acquiring samples and the questionnaires EC will administer. Their is no guarantee of further funding.

Perhaps we might stop to ask the question: why the turnabout in the UK to a biomedical model just as PACE has failed. Is it because those at the CMRC recognise that the BPS model is incorrect or because they need to make a desperate attempt to control the narrative through pretense of biomedical research to maintain outward public credibility to those who don't look too hard at their methods?

They also need to do this now because they know that others elsewhere are getting close to an understanding of this disease and how to treat it. They can ignore all that research so long as they can say that they have something similar in the pipeline. They must simply await the results of their own research (then drag it out).

Nothing has changed. BPS are still in charge and they report to political bureaucrats in the NHS and elsewhere. There is a bigger context here than MEGA being an isolated piece of research. The treatment of people with ME in the UK reflects a larger agenda of treatment of disabled and unemployed people.

 

[batteredoldbook]

Nothing has changed. BPS are still in charge and they report to political bureaucrats in the NHS and elsewhere. There is a bigger context here than MEGA being an isolated piece of research. The treatment of people with ME in the UK reflects a larger agenda of treatment of disabled and unemployed people.

As far as I'm concerned one thing has changed. By supporting EC, and allowing 200 patients to be disrespected: I think the ME Association is done. Over. The End.

 

[Snowdrop]

As far as I'm concerned one thing has changed. By supporting EC, and allowing 200 patients to be disrespected: I think the ME Association is done. Over. The End.

I'm kind of agnostic on that. But I do consider Invest in ME to be a bright spot in an otherwise dark place.

 

[batteredoldbook]

I'm kind of agnostic on that.

People with M.E need rest, research and respect.

For me, respect is the root of this problem, it is the foundation upon which good treatment and good research can be built. People with M.E are still being disrespected, bullied even. The idea that this is ignored, rubber-stamped or aided by M.E charities is simply too much. From my perspective, blocking those who support bad science or mistreatment is a simple thing that I can do. I appreciate others think differently.

But I do consider Invest in ME to be a bright spot in an otherwise dark place.

Between my late 90s website and when I restarted discussing M.E online in 2012, the knowledge that Invest were working so effectively on the problem really gave me comfort. I was very sad not to be able to build a relationship with them.

 

[Snowdrop]

For me, respect is the root of this problem, it is the foundation upon which good treatment and good research can be built. People with M.E are still being disrespected, bullied even. The idea that this is ignored, rubber-stamped or aided by M.E charities is simply too much. From my perspective, blocking those who support bad science or mistreatment is a simple thing that I can do. I appreciate others think differently.

With regard to that statement I guess my thinking would be along the lines of: hard to disagree with the statement but I see life as imperfect and messy. So have to move forward acknowledging things will never be wholly one thing or another when taking in the larger context.

I see MEA as wanting to compromise to gain some concessions while I see BPS dealing in bad faith. So different motivations behind their actions that I think are worth considering.

 

[batteredoldbook]

I see MEA as wanting to compromise to gain some concessions while I see BPS dealing in bad faith. So different motivations behind their actions that I think are worth considering.

I do understand the value of pragmatism, it's just that I do not believe it's what the ME Association are pursing. I think they have chosen to submit to a system that mistreats people with ME. I think they are unable or unwilling to challenge medical authority. I think MEGA is way too much compromise to make and I think people with M.E are currently being treated disrespectfully by the MEGA team.

Through our own efforts, and through progress in research, we are in a much stronger position than we were in 2011. I wish people with M.E would stop looking forever outwards in search of those in positions of influence and power and start to realize that the things we need to address this problem are within ourselves. Have you seen how much talent there is within the M.E community? It's jaw-dropping.

MEGA was the last chance for the MEA as far as I was concerned.

 

[Esther12]

It's been a long time since I felt able to expect being treated with respect!

tbh, I can't get too het up about the softer side of 'respect', when there are so many real abuses of power going on. I don't mind people speaking to me with a lack of respect so long as they don't have power over me, and I can respond in kind.

 

[batteredoldbook]

It's been a long time since I felt able to expect being treated with respect!
tbh, I can't get too het up about the softer side of 'respect', when there are so many real abuses of power going on. I don't mind people speaking to me with a lack of respect so long as they don't have power over me, and I can respond in kind.

Understand your pov but I've found the smaller things to be the thin end of the wedge.

 

[Snowdrop]

Through our own efforts, and through progress in research, we are in a much stronger position than we were in 2011. I wish people with M.E would stop looking forever outwards in search of those in positions of influence and power and start to realize that the things we need to address this problem are within ourselves. Have you seen how much talent there is within the M.E community? It's jaw-dropping.

I don't doubt that's true and you have a point. But also those talented people are ill and the work they put in jepardizes their health.
I would dearly love to see someone with real popular clout cosy up and help spread some truth around.

As I mentioned somewhere else. Not all voices are equally heard. It may be wrong but it is what it is.

 

[batteredoldbook]

...also those talented people are ill and the work they put in jepardizes their health.

Yes. That's the heroic part of this. It is amazing what has been done by people who knew that their efforts would make them sicker.

I would dearly love to see someone with real popular clout cosy up and help spread some truth around. As I mentioned somewhere else. Not all voices are equally heard. It may be wrong but it is what it is.

Such people have successfully climbed the social ladder. Would they help us if it meant challenging the very structure that supports their own position?

 

[Barry53]

Such people have successfully climbed the social ladder. Would they help us if it meant challenging the very structure that supports their own position?

Courage? Integrity? Honesty? Compassion? Hmm ... yes ... I see what you mean.

 

[Sean]

They may not like having to allow for the concessions made regarding the illness but they are desperate and they are staring at the abyss of irrelevance...

And worse. Much worse.

As trashed as my life has been (courtesy of their malfeasance), I wouldn't want to be in their shoes for all the world. When they fall, it is going to be long and hard, and they will be taking down a whole bunch of others with them.

As you observed, this goes way past just MEGA, or ME/CFS, or medicine. There is a serious corruption at the heart of general governance that has allowed them to get away with this foul shite for decades.

The question is: who benefits from that? Certainly isn't us patients, or the general community.