• 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, 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.

Petition: Opposing MEGA

Barry53

Senior Member
Messages
2,391
Location
UK
Needless to say, the following is just my own personal opinion.

For me "respect" is a single word used for two different forms of respect, meaning it can sometimes be very hard to differentiate, conflating the two being almost inevitable at times.

Respect is often used in the sense of respecting a person's basic human rights. To me this is immutable, though occasionally takes considerable effort of will to uphold; but if you do not then you are lost, especially to yourself. This in no way impedes, nor should impede, (very!) robust, hard hitting debate as and when needed. It took me a little while to decide whether to join PR (having seen other material regarding "activists"), because I was concerned respect for basic human rights might not be upheld, but to date, although occasionally the line seems to be closely approached, everyone's posts here seem to always stay the right side of the line.

I have come to the conclusion that it is this fundamental, human rights kind of respect that the PACE trial authors, and the BSP school etc, have not shown to ME sufferers, and continue not to. I could elaborate at length here, but I suspect is unnecessary ;).

The other common form of respect, is respecting someone for their behaviour, their application of their beliefs onto others. For me this this kind of respect is most definitely earned. I reserve the right to apportion this kind of respect as I see fit (indeed I see it as basic human right for anyone), provided that does not manifest itself in ways that infringe the basic human rights of others.

Conflating the two is all too easy. For instance someone has a basic human right to their own beliefs, and that basic right should be respected. But that is not the same as having to respect what that belief stands for. So for example: I respect SW's right to hold his belief (I have to, else I am no better than him), but I have absolutely no respect for what that belief stands for, nor its manifestation; it disgusts me.

We have to distinguish between respecting someone's basic right to hold a belief, versus respecting what that belief stands for - very different things.

It is not uncommon for someone to accuse another of abusing their right to hold their own beliefs, when in fact they are really being chastised for trying to foist those beliefs and consequences onto others.
 

Deepwater

Senior Member
Messages
208
I was saying that anyone, be that the BPS school or others, who continually claim they have been harassed or abused should refrain from making these statements without either providing the evidence or making a proper complaint to the police. Otherwise it's simply mudslinging, creating a narrative that might be false. We of course see it promulgated mainly by the BPS school but some advocates seem to like to repeat these slurs without providing any evidence they exist. Of course it's wrong to harass and abuse but it's also wrong to make slurs against a patient population which may be entirely innocent of any wrong doing. It's particularly insidious of 'advocates' to make comments about harassment without providing good evidence as they do, in effect, reinforce this notion that the BPS school continues to repeat at every opportunity. It feels more adversarial than it does the act of an advocate fully onside. In terms of skewed notions of harassment such as conflating FOIA requests etc with abuse then if these poor little flowers find that too bruising they should just shut up and get out.

It's been mentioned before on this thread, but I'd just like to add that, if there are PwME sending abusive emails and twitter messages, this would make us no different from any other group around. I know people running what one might consider to be uncontentious organisations such as historical societies who have also been subject to extremely abusive emails. It is - appallingly - the way the world has gone (look at the recent US election). And suffering medical abuse and scorn for years on end can lower even a nice person's anger threshold; our lives are running out.

I heartily endorse the idea that there should be a place where genuinely abusive messages sent to patient advocates can be made public so that the whole community isn't implicated by inference.
 

Barry53

Senior Member
Messages
2,391
Location
UK
upload_2016-11-20_20-5-5.png


Is this really open access? Or is the word "open" being used a bit too freely here? Making data "available for researchers to use" is not necessarily the same thing at all - PACE did that ... but only to their chosen researchers! Do we have anything in writing from MEGA that data will be made openly available, whenever any results are published? It really is a vital distinction.
Perfectly valid question

I'm sorry but I cannot prove the clarification you require

I am happy to add this to my list of questions for the planning group

CS
Given the above, the unequivocal "Yes" in the MEA's above answer is currently misleading. Could it be modified to say more along the lines of:-

"We are currently seeking confirmation that the data will be made openly accessible. Currently all we know is that, subject to individuals’ consent, the data and the samples will be available for researchers to use. We want to rapidly increase effective research (by us, by anyone) to understand the biology, causes and different types of CFS/ME."

Or something along those lines?
 

charles shepherd

Senior Member
Messages
2,239
View attachment 18376



Given the above, the unequivocal "Yes" in the MEA's above answer is currently misleading. Could it be modified to say more along the lines of:-

"We are currently seeking confirmation that the data will be made openly accessible. Currently all we know is that, subject to individuals’ consent, the data and the samples will be available for researchers to use. We want to rapidly increase effective research (by us, by anyone) to understand the biology, causes and different types of CFS/ME."

Or something along those lines?

Just to quickly clarify - this is not an MEA answer

This is an answer that has been provided by the MEGA planning group

As already noted, I am not a member of the MEGA planning group and have not been invited to be a member of the MEGA planning group

CS
 

Barry53

Senior Member
Messages
2,391
Location
UK
Just to quickly clarify - this is not an MEA answer

This is an answer that has been provided by the MEGA planning group

As already noted, I am not a member of the MEGA planning group and have not been invited to be a member of the MEGA planning group

CS
Many thanks for clarifying, that completely passed me by. I did not really notice the statement at the top of the page ...
upload_2016-11-20_20-36-26.png

... and therefore just assumed the FAQ is being managed by the MEA. Not sure if it might be helpful to clarify this (unless it was just me got this wrong).

In fact it comes across to me as something of a misdirection by MEGA, and I would think maybe the MEA should make clear it does not necessarily endorse all that the answers imply.
 

Attachments

  • upload_2016-11-20_20-35-56.png
    upload_2016-11-20_20-35-56.png
    8.6 KB · Views: 9

user9876

Senior Member
Messages
4,556
View attachment 18376



Given the above, the unequivocal "Yes" in the MEA's above answer is currently misleading. Could it be modified to say more along the lines of:-

"We are currently seeking confirmation that the data will be made openly accessible. Currently all we know is that, subject to individuals’ consent, the data and the samples will be available for researchers to use. We want to rapidly increase effective research (by us, by anyone) to understand the biology, causes and different types of CFS/ME."

Or something along those lines?

Saying something like this is unclear as to what a researcher is. Do they mean someone working at a university? Someone who is a medical researcher (which could remove people doing data analysis research). Of course what we heard with PACE was that sharing would only be considered with an 'approved' analysis plan.

I very much doubt if Holgate is a supported of open data.
 

Jan

Senior Member
Messages
458
Location
Devon UK
Just to quickly clarify - this is not an MEA answer

This is an answer that has been provided by the MEGA planning group

As already noted, I am not a member of the MEGA planning group and have not been invited to be a member of the MEGA planning group

CS

Really? I'd like to know why you haven't been invited, I imagine the MEA is the largest patient organization. I find this quite shocking. They say they want to engage with patients, but don't even invite our biggest representative. Now I'm even more worried.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Really? I'd like to know why you haven't been invited, I imagine the MEA is the largest patient organization. I find this quite shocking. They say they want to engage with patients, but don't even invite our biggest representative. Now I'm even more worried.

I would expect Action for ME still has a larger membership than the MEA (though Action for ME's membership has fallen over the years).

I think both organisations should be transparent about their membership figures by including them in their respective year end Annual Report and Accounts.

Would Dr Shepherd like to provide last year's MEA membership figure?
 

Jan

Senior Member
Messages
458
Location
Devon UK
It's been mentioned before on this thread, but I'd just like to add that, if there are PwME sending abusive emails and twitter messages, this would make us no different from any other group around. I know people running what one might consider to be uncontentious organisations such as historical societies who have also been subject to extremely abusive emails. It is - appallingly - the way the world has gone (look at the recent US election). And suffering medical abuse and scorn for years on end can lower even a nice person's anger threshold; our lives are running out.

I heartily endorse the idea that there should be a place where genuinely abusive messages sent to patient advocates can be made public so that the whole community isn't implicated by inference.

Very well said! I am sick of hearing about this subject with regard to ME sufferers. These sort of disrespectful people are sadly a fact of life, in any area, why must they be highlighted so often with regards to us. I find it very upsetting feeling like we are all tarred by the same brush, when this is not the case.

Medical abuse and neglect is still far worse in my eyes, maybe people should think about that a little more.
 

charles shepherd

Senior Member
Messages
2,239
I would expect Action for ME still has a larger membership than the MEA (though Action for ME's membership has fallen over the years).

I think both organisations should be transparent about their membership figures by including them in their respective year end Annual Report and Accounts.

Would Dr Shepherd like to provide last year's MEA membership figure?

I don't have an exact figure to hand

What I do know is that MEA membership has been slowly rising in recent years and from membership subscription figures so far this year it is significantly up on last year

I think the current figure is around 4500 and this includes a number of honorary memberships

This is probably less than the AfME figure and we do not claim to be the largest ME/CFS support charity
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Income from Subscriptions* history:

Action for ME:

2015-16 £103,075

2014-15 £107,885

2013-14 £108,829


MEA:

2015- £72,420

2014- £70,503

2013- £70,264

*Caveat: direct comparison between the two orgs cannot be made due to different subscription fee structures; how many members have their fee waived on grounds of financial hardship; family subs; lifetime subs, late payment of renewals etc. but in lieu of transparency over membership figures, I present these figures from the respective Annual Reports and Accounts for interest.
 
Last edited:

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
I don't have an exact figure to hand

What I do know is that MEA membership has been slowly rising in recent years and from membership subscription figures so far this year it is significantly up on last year

I think the current figure is around 4500 and this includes a number of honorary memberships

This is probably less than the AfME figure and we do not claim to be the largest ME/CFS support charity

Thank you for this response. Why does the MEA not publish its membership figures in its Annual Report and Accounts or on the website?
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I heartily endorse the idea that there should be a place where genuinely abusive messages sent to patient advocates can be made public so that the whole community isn't implicated by inference.
Maybe we could organise a christmas reading along the lines of Love Letters to Richard Dawkins:

(warning - do not click this link if you are offended by bad language)


I would be happy to contribute a reading of the PM that Ellen Goudsmit sent me after I called her out for badmouthing PR on twitter, where I am accused of "tweet theft" and much else.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
I never believe the 250,000 UK sufferers figure. It has to be way off, and given how many members there are in just two charities I wonder what the true figure is now, one million perhaps?

Some MEA members may also hold membership of AfME.

I would estimate AfME's membership between 5,000 and 6,500. So we might be looking at a total membership figure of perhaps 10,000 people across the two orgs.

Which would be interesting to compare with the membership of the MS Society* compared to the estimated number of MS patients in the UK.

*35,000 plus members

"Approximately 100,000 people in the UK have multiple sclerosis..." figure from another ME org (MS-UK)

I shall be asking AfME to disclose their last year's membership figure.
 
Last edited:

charles shepherd

Senior Member
Messages
2,239
Income from Subscriptions* history:

Action for ME:

2015-16 £103,075

2014-15 £107,885

2013-14 £108,829


MEA:

2015- £72,420

2014- £70,503

2013- £70,264

*Caveat: direct comparison between the two orgs cannot be made due to different subscription fee structures; how many members have their fee waived on grounds of financial hardship; family subs; lifetime subs, late payment of renewals etc. but in lieu of transparency over membership figures, I present these figures from the respective Annual Reports and Accounts for interest.

Thanks for the figures!

At a time when many medical charities are reporting a steady decline in membership, it's encouraging to note that our membership is steadily rising year on year, with another rise forecast for 2016

As already noted, we have people with reduced membership fees and no membership fees as well
 

Jo Best

Senior Member
Messages
1,032
Some MEA members may also hold membership of AfME.

I would estimate AfME's membership between 5000 and 6,500. So we might be looking at a total membership figure of perhaps 10,000 people across the two orgs.

Which would be interesting to compare with the membership of the MS Society* compared to the estimated number of MS patients in the UK.

*35,000 plus members

"Approximately 100,000 people in the UK have multiple sclerosis..." figure from another ME org (MS-UK)

My first contact with Invest in ME was to ask them to consider having membership as it was only when I joined facebook in 2010 that I saw how many people wanted to belong to a charity but felt they had Hobson's choice between AfME and MEA and when I saw IiME's proposal for a centre of excellence and looked into what they were doing (campaigning as well as planning a translational biomedical research strategy of their own) I sensed there were a lot of folks like me who'd like to support their work through membership but I I received a helpful reply from Invest in ME (Research) Chairman Kathleen McCall explaining why they don't have membership.