MEA: Make M.E. Better campaign

[AndyPR]

From their Facebook page
https://www.facebook.com/1714114695...411469583186/1203130493077940/?type=3&theater

ME ASSOCIATION UNVEILS IT’S MOST AMBITIOUS CHRISTMAS APPEAL EVER

Helen Hyland, our fundraising manager, writes:

Our Make ME Better campaign aims to raise £50,000 to fund scientific research which we hope could lead to a breakthrough in diagnosis and treatment of ME/CFS.

Led by Dr Karl Morten, scientists from the University of Oxford and Newcastle University wish to spend 12 months analysing nearly 300 blood samples, looking at metabolomics - chemical clues that are left behind after changes in cells. Put simply, they’re on the hunt for a smoking gun.

The British research will pick up the gauntlet of the groundbreaking Naviaux study released by the University of California earlier this year, which suggested that ME/CFS could be the body going into a state of semi-hibernation.

Dr Morten will be working alongside Prof James McCullagh and Professor Julia Newton, Dean for Clinical Medicine at Newcastle University.

Many of the blood samples will come from the ME/CFS Biobank – the first significant time they have been used by external researchers - and will be compared to those from a control group.

We know £50,000 is a big target, particularly in the run up to the festive season. But we ask everyone who can, to please help us to reach it. Making ME Better would be the best Christmas present thousands of sufferers and their families could ask for.

And I have it on the best authority (Dr Charles no less) that has a good chance of achieving that.

You can support MAKE ME BETTER

- Online at https://www.justgiving.com/…/cha…/meassociation/makemebetter

- By cheque or by card payment to our office – just call 01280 818964 and please don’t forget to Gift Aid your donation, if you can.

- By fundraising.

For the first time ever, you can involve all your friends and family in fundraising for this appeal – a Santa dash, Christmas party, or community Christmas card…...

Once you’ve decided what you want to do, simply click on the ‘Start fundraising’ tab of the campaign page to get started.

Please support our campaign to MAKE ME BETTER in whatever way you can.

 

[eafw]

Here's a suggestion to boost donations: leave the CMRC and take Prof Newton (currently med advisor to AfME) and any other remotely ethical or decent researchers/orgs with you. Form a new alliance that is not bound in the denialist, manipulative, anti-patient politics that we see with the CMRC in its current form and with its current administration. That would be a nice Xmas present for us all.

 

[Wildcat]

.
MEA - Why don't you Make ME Better by Ceasing Collaboration with the MRC ME Collaborative (CMRC), and ceasing to Collaborate with Dr Esther Crawley and MEGA!

Why doesn't the MEA Make ME Better by stopping endorsing the CMRC and ceasing having dealings with Dr Esther Crawley??.
.

 

[Deepwater]

I wholly agree. I gave MEA membership a second chance, but . . . .
It's not lack of good will, I'm sure, but the persistent yet groundless hope that the BPS school can be gradually brought round, or even brought on board.

People who falsify the results of their studies in order to shore up a flawed model, and spend £0.25 million hiding the data, are not genuinely mistaken and open to persuasion. We should not be grateful for crumbs thrown down at us from top table. This is simply a strategy for keeping us quiescent whilst the scam goes on.

 

[charles shepherd]

Metabolomic research in the UK:

MEA launches an Xmas appeal to raise funds for a UK metabolomic research study involving the Universities of Oxford and Newcastle and the ME biobank at the Royal Free Hospital in London (part of the University College London Biobank)

More information here:

http://www.meassociation.org.uk/how-you-can-help/make-me-better/

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[trishrhymes]

Brilliant. It's so good to have research in the UK that I can support wholeheartedly. I will definitely give all I can. Thank you for your good work.

 

[Barry53]

People who falsify the results of their studies in order to shore up a flawed model, and spend £0.25 million hiding the data, are not genuinely mistaken and open to persuasion.

Agree with that 100%.

What I am unclear on is where the BPS issues apply to Make ME Better - I am not criticizing, I genuinely need to understand.

 

[charles shepherd]

Robert Naviaux et al study, which forms the basis for this new UK research initiative:


Full paper vailable here:

http://www.pnas.org/content/113/37/E5472.full

ABSTRACT:

More than 2 million people in the United States have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

We performed targeted, broad-spectrum metabolomics to gain insights into the biology of CFS.

We studied a total of 84 subjects using these methods. Forty-five subjects (n = 22 men and 23 women) met diagnostic criteria for ME/CFS by Institute of Medicine, Canadian, and Fukuda criteria. T

hirty-nine subjects (n = 18 men and 21 women) were age- and sex-matched normal controls. Males with CFS were 53 (±2.8) y old (mean ± SEM; range, 21–67 y). Females were 52 (±2.5) y old (range, 20–67 y).

The Karnofsky performance scores were 62 (±3.2) for males and 54 (±3.3) for females.

We targeted 612 metabolites in plasma from 63 biochemical pathways by hydrophilic interaction liquid chromatography, electrospray ionization, and tandem mass spectrometry in a single-injection method.

Patients with CFS showed abnormalities in 20 metabolic pathways.

Eighty percent of the diagnostic metabolites were decreased, consistent with a hypometabolic syndrome.

Pathway abnormalities included sphingolipid, phospholipid, purine, cholesterol, microbiome, pyrroline-5-carboxylate, riboflavin, branch chain amino acid, peroxisomal, and mitochondrial metabolism. Area under the receiver operator characteristic curve analysis showed diagnostic accuracies of 94% [95% confidence interval (CI), 84–100%] in males using eight metabolites and 96% (95% CI, 86–100%) in females using 13 metabolites.

Our data show that despite the heterogeneity of factors leading to CFS, the cellular metabolic response in patients was homogeneous, statistically robust, and chemically similar to the evolutionarily conserved persistence response to environmental stress known as dauer.

 

[AndyPR]

Agree with that 100%.

What I am unclear on is where the BPS issues apply to Make ME Better - I am not criticizing, I genuinely need to understand.

I would guess Deepwaters line of thinking is Make ME Better>ME Association>CMRC/MEGA>Crawley/White>FITNET/PACE and therefore all that the ME Association does is influenced by the BPS believers. I don't believe that just because the MEA are involved with BPS believers at CMRC/MEGA level that Make ME Better is tainted by BPS as well. From the details it would seem to be 100% biomedical, which is what we all want, and independent from the CMRC, but Deepwater would have to confirm what the exact accusation is.

 

[A.B.]

Donated.

 

[eafw]

I hope this separate argument will not put people off donating,

I am a member of the MEA and intend to donate. As a member I also expect them to pay regard to the fact that their position within the CMRC is increasingly untenable.

They have a perfect opportunity here to consider their position in light of MEGA/FITNET/yet more SMC propaganda ... "to celebrate the launch of a new ME research collaboration we are raising funds for a metabolomic study" ... would be very powerful.

 

[BurnA]

This sounds like a great study and one I have no hesitation supporting.

If only all studies were so clear cut !

£50k seems like a relatively small amount for a metabolomic study of 300 samples run by multiple scientists over the course of a year, do we know if this is the total study funding or just the amount being raised now.

Would be nice to know too if there was any collaboration or discussion with other scientists ( Naviaux, Davis or Hansen) to ensure results would be comparable.

 

[slysaint]

I am a member of the MEA and intend to donate. As a member I also expect them to pay regard to the fact that their position within the CMRC is increasingly untenable.

They have a perfect opportunity here to consider their position in light of MEGA/FITNET/yet more SMC propaganda ... "to celebrate the launch of a new ME research collaboration we are raising funds for a metabolomic study" ... would be very powerful.

I agree and
If publicised well; ie lot's of good media coverage, the MEA leaving the CMRC, with vocal support from Tymes Trust and Invest in ME, it could provide an excellent platform to publicly blow the whistle on the whole lot. From Simon Wessely at the SMC to Esther Crawleys plethora of 'activities' (including her influence over AYME).

 

[JohnCB]

Thank you to everyone at the MEA for organising this research and funding.

Have donated too.

 

[JohnCB]

I wholly agree. I gave MEA membership a second chance, but . . . .
It's not lack of good will, I'm sure, but the persistent yet groundless hope that the BPS school can be gradually brought round, or even brought on board.

People who falsify the results of their studies in order to shore up a flawed model, and spend £0.25 million hiding the data, are not genuinely mistaken and open to persuasion. We should not be grateful for crumbs thrown down at us from top table. This is simply a strategy for keeping us quiescent whilst the scam goes on.

I am happy that the MEA stays represented on the CMRC. I think it is worth being on the inside with even a small chance of influence. This is likely the only way that the medical researchers will hear our point of view. It is Charles Shepherd who is giving up his time to speak on our behalf. He has enough clout that unbiased medical people involved will listen to him and some chance of counterbalancing the bias that is clearly there already. There are plenty of people shouting from the outside. Just because he will sit down and speak in this organisation does not make him our enemy. He remains our friend.

 

[Barry53]

I am happy that the MEA stays represented on the CMRC. I think it is worth being on the inside with even a small chance of influence. This is likely the only way that the medical researchers will hear our point of view. It is Charles Shepherd who is giving up his time to speak on our behalf. He has enough clout that unbiased medical people involved will listen to him and some chance of counterbalancing the bias that is clearly there already. There are plenty of people shouting from the outside. Just because he will sit down and speak in this organisation does not make him our enemy. He remains our friend.

This makes a lot of sense to me.

 

[mango]

I am happy that the MEA stays represented on the CMRC. I think it is worth being on the inside with even a small chance of influence. [...]

I agree.

 

[Barry53]

Donated. It would be wonderful for the UK to help reinforce Naviaux's work. Even better if reliable diagnosis could be discovered. I think it is important for this work to be done anyway, but especially good if done in the UK.

 

[char47]

@charles shepherd
this is so encouraging Dr Shepherd I feel quite excited a huge well done to yourself & all involved. Have donated & will continue to give all i can & spread the word.
some hope to end the day with

*ahem* *cough* perhaps you should start a petition

 

[charles shepherd]

I agree.

Thanks - it's clearly a very thankless task sitting on the Board of the CMRC as far as most ME/CFS internet discussion groups are concerned

So it's great to just occasionally find that someone appreciates the reason why I have always been keen to join committees and groups to put forward the patient point of view to people I do not always agree with

Put very simply, I do not believe it is sensible for charities who represent people with ME/CFS to say that they will not join a group or committee at the DWP, MRC, DoH, NICE etc when the organisation has enormous influece when it comes to making crucial decisions about people with ME/CFS

Because complaining/moaning/shouting from outside the tent usually has little or no effect whatsoever

So I won't be resigning from the Board of the CMRC...…..

And I will continue to support the AIMS of the MEGA study because I believe that Stephen Holgate has brought together a group of world class -omic experts who are new to ME/CFS research.

And if we can get the protocol right, especially in relation to patient selection, then this research (which is NOT psychiatric research as is being portrayed by some people) could provide some really useful information on sub-grouping that would help to separate people under the very unsatisfactory NICE 'on size fits all' treatment model of ME/CFS

If we can get the protocol and planning group right for MEGA then the MEA will endorse the research grant application when it is made in 2017

If not, we will not endorse it