Petition: Opposing MEGA

[trishrhymes]

And now some real science:

I've just come across this in another thread. It's Chris Armstrong at Melbourne university doing a 20 minute interview about their work and international work on metabolomics etc. Spells out clearly that all the psych stuff is so much out of date and irrelevant now. Brilliant. If anyone's writing to the MEGA people, especially Holgate, can they flag it up and urge him to listen to it. I'd do so myself but I've just sent him my missive.

http://insidestory.org.au/in-melbourne-progress-on-chronic-fatigue

Might flag it up for my doctor too, next time I see her.

 

[eafw]

Or do they really have so much political protection that they know they can continue acting like this with impunity?

Yes, and we need to fight it as a political issue. There's a few scientists who might respond to reason, but by and large it's a battle against establishment schemers, and everyone who is taken in by them.

 

[slysaint]

Its not clear which of Crawley's studies the Brighton Argus Newspaper report refers to -

or this one
https://pediatrics.aappublications.org/content/130/1/e71.long?trendmd-shared=0

this is different
basically a lifelong study on fatigue; children
"14 000 expectant mothers were recruited into the study, and the children have been followed up regularly since birth with postal questionnaires for both children and their parents, clinical assessments, and the collection of biological samples"

"When the study children were aged 13 years, their mothers or main carers were sent a questionnaire that included questions on whether their teenager had been feeling tired or lacking in energy over the last month (yes, no); how long the tiredness had lasted (<3 months, 3 to 5 months, 6 months to 5 years, ≥5 years); how many days their teenager had missed school because of tiredness; and whether the tiredness/lack of energy had stopped the teenager taking part in hobbies, sport, or leisure activities (not at all; only a little; quite a lot; a great deal). The questionnaires asked whether the teenager snored (never, sometimes, often); whether the mother thought the fatigue was due to the teenager playing too much sport; and whether the teenager took regular medication"

"Of the 5657 13 year olds with sufficient information to define chronic disabling fatigue, 1995 were tired or lacking in energy in the last month. Of these, the following did not have chronic disabling fatigue: 1284 who were tired for <3 months; 516 who had fatigue but were not disabled by it; 18 whose mothers thought they were fatigued due to playing too much sport; 27 who snored frequently (to exclude sleep apnea); and 33 who had probable depression. There were no teenagers on medication for long-term illnesses that could have caused the fatigue. There were 296 children with missing data on snoring, and it was assumed they did not snore frequently."

"Of 117 13 year olds with chronic disabling fatigue of at least 3 months’ duration, 53 (45.30%) had been affected for more than 6 months and 7 for more than 5 years."

"The main limitation of this study is that definitions of chronic disabling fatigue were based on parental reports of symptoms. The CDC8 criteria require that 4 of 8 additional symptoms are present, whereas the NICE9 criteria require 1 additional symptom. Each set of criteria require physician diagnosis to exclude other conditions that cause fatigue."
"To our knowledge, this is the first study to reveal an association of early life family adversity with chronic disabling fatigue in teenagers. Our results are consistent with studies in adults, which describe an inverse association between CFS/ME and socioeconomic status"

Think the one on 16 year olds was a follow up from this one.

IMO The most likely candidates for ME are the 7 that were ill for more than 5 years and possibly some of the 53 affected for more than 6 months but without any other criteria it's all largely supposition/guesswork.

Shows (again) how this approach is wrong if the study purports to be one on ME or CFS (MEGA) rather than 'chronic disabling fatigue'.

 

[Esther12]

http://www.theargus.co.uk/news/1424...r_young_people_with_CFS_needed_across_Sussex/

Colin Barton is just the worst (or tied with Mary Jane Willow?). Does anyone know if there is an alternative group in Sussex or Kent that could be promoted over his rubbish one? It's always seemed like he's got influence just because he fits in with what authority figures want from him.

 

[Jonathan Edwards]

Yes I would say so. In true EC style, the words are all there, but the subliminal messaging is incredibly biased. "Treatment" is the big bold first word, and the word "study" is the diminutive last word. Let alone the phrase "specialist treatment is now available". I do not see how a "study" can be conflated with approved treatment, and the word "treatment" in this context has to imply approved treatment.

It looks very much as if this study is already making exactly the sort of error that sunk PACE. I do not see how you can conduct an unblinded study of CBT while telling trial entrants that you know the test treatment works.

 

[Jo Best]

Just to add link here to new post on Opposing MEGA website -
https://opposingmega.wordpress.com/2016/11/23/dr-david-tuller-explains-why-many-oppose-mega/

 

[TiredSam]

Further to my earlier post #1325, in which I speculated about the recruitment for FITNET possibly being extended to Sussex (and Kent) -

So now we have the ridiculous position where the best thing that any genuinely caring pediatrician can do for a child with ME is to withhold an ME diagnosis, because to diagnose them is to put them at risk of being caught up in childcatcher Crawley's ME to GET pipeline and having their health permanently ruined.

Meanwhile Crawley and like-minded pediatricians will be diagnosing children who don't have ME as having Crawley Fatigue Syndrome thus meeting the criteria for FITNET, where their recovery will boost the results and prove that GET and CBT cure ME.

You couldn't make this shit up. How many real child ME sufferers are going to get caught up in this charade and have their health permanently ruined, and then possibly receive a new psychological diagnosis which blames them and their mothers for their failure to improve? Shouldn't there be a sense of urgency here? Once these children are recruited they'll be separated from parents/witnesses, subjected to GET and have their health ruined. There are enough accounts of this happening, and EC is only becoming more brazen.

 

[slysaint]

Shouldn't there be a sense of urgency here? Once these children are recruited they'll be separated from parents/witnesses, subjected to GET and have their health ruined

All I can think of at the moment is for people to contact the ME support groups with some kind of warning about ECs studies.
here is a list:
ME SUPPORT GROUPS UK

Worthing & West Sussex Fibromyalgia Support Group
nicolaabond@gmail.com
77966 534 77
Ferring Baptist Church
Hall,
Greystock Road,
Ferring,
Sussex, West,
BN12 5JL

Havant Region MESH
alija1001@hotmail.co.uk
02392 711 212
10 Chalton Crescent,
Havant,
Hampshire,
PO9 4PT

Sussex & Kent M.E./CFS Society
colin.sussexme@btinternet.com
01273 674 828
Sussex & Kent ME/CFS
Society,
PO Box 309,
Brighton,
Sussex,
BN50 9FR

reMEmber
me_cfs@hotmail.com
01273 831 733
PO Box 1647,
Hassocks,
Sussex, West,
BN6 9GQ

Lewes M.E. Support Group
lewes.me.cfs@gmail.com
07816 203 784
The Real Eating Company,
18 Cliffe High Street,
Lewes,
Sussex, East,
BN7 2XX

Locks Heath M.E./CFS Self Help Group
01489 600 892
,
,
Hampshire,
SO31 7ET

Horley Self Help Fibromyalgia Group
trudigurney@hotmail.com
07786 556 405
9 Chequers Close,
Horley,
Surrey,
RH6 8DS

Redhill M.E. Support Group
hilarygrinyer@aol.com
01737 761 776
Linkfield Manor Cottage,
36 Linkfield Lane,
,
Surrey,
RH1 1DU

Guildford M.E. Support Group
guildfordme@hotmail.co.uk
01276 474 263
37 Keswick Drive,
Lightwater,
,
Surrey,
GU18 5XE

Fibro Support Group North Surrey
lynnsfibrogroup@yahoo.co.uk
1 Gayton Close,
Ashtead,
Surrey,
KT21 2QJ

Crowborough Support Group
Graham@meetup.org.uk
,
,
Sussex, East,
TN6 3RJ

Swindon M.E. Support Group
swindonmesupportgroup@hotmail.co.uk
01793 614 643
2 Argye Street,
Swindon,
,
Wiltshire,
SM2 8AR

Sutton M.E./CFS Support Group
sutton.megroup@virgin.net
020 8287 6206
318 Malden Road,
North Cheam,
Sutton,
Surrey,
SM3 8EP

Croydon M.E. Support Group
020 8681 2990
23 Jarvis Road,
South Croydon,
,
Surrey,
CR2 6HW

Richmond and Kingston M.E. Group
randkmegroup@yahoo.co.uk
Florence Villa,
Park Lane,
Teddington,
Middlesex,
TW11 0HY

Reading Area M.E. Support Group
helpme.2012@yahoo.co.uk , New members: Patricia,
newmembers.megroup@yahoo.co.uk
0118 926 5755
10 Linden Road,
Reading,
Berkshire, West,
RG5 3QT

South East London M.E. Support Group (SELMESG)
020 8771 2490
23 Blenheim Court,
17 Beulah Hill,
London,
London, Greater,
SE19 3LJ

Fibromyalgia in Tonbridge Support Group
fibromyalgia.tonbridge@hotmail.com
0844 887 2429
Tonbridge Baptist Church,
Darenth Avenue,
,
Kent,
TN10 3HZ

Network MESH (West London)
tony@bedfordpark.demon.co.uk
020 8400 1904
9 Priory Avenue,
Chiswick,
London,
London, Greater,
W4 1TX

Salisbury and South Wilts M.E Self Help Group
rupertgowenlock@hotmail.co.uk
01722 322 802
C/o, 17 Devonshire Road,
Salisbury,
Wilts ,
SP1 3NN

Bexley M.E. Support Group
020 8303 8553
6 Cavendish Avenue,
Welling,
Kent,
DA16 2EP

North London M.E. Network
info@nlmenetwork.org.uk
07816 979 262
22b,
St Kilda's Road,
,
London, Greater,
N16 5BZ

Fibromyalgia Support Group (Medway)
fibromedway@yahoo.co.uk
134 Scott Avenue, ,
Rainham,,
,
Kent,
ME8 8EH

Kent & Sussex Alternative M.E. Group
joyouslogenberry@tesco.net
01634 270 425
12 Lapwig Road,
Isle of Grain,
Rochester,
Kent,
ME3 0EB

Aylesbury Chronic Pain & Fibromyalgia Support Group
fmaaylesbury@gmail.com
0844 887 2451
Fairford Leys Church,
Hampden Square,
Aylesbury,
Buckinghamshire,
HP19 7HT

Foggy's
support@butyoudontlooksick.co.uk
2 Clanfield Road,
Park North,
Swindon,
Wiltshire,
SN3 2NZ

Swindon Carers Centre
carers@swindoncarers.org.uk
01793 531 133
Swindon Carers Centre,
Swindon Advice &
Support Centre, ,
Swindon and Area
Fibromyalgia Support
Group,
Wiltshire,
SN1 1QH

Oxfordshire M.E. Group for Action (OMEGA)
enquire.omega@gmail.com
01865 766 310
4 Bursill Close,
Headington,
Oxford,
Oxfordshire,
OX3 8EW

Chiltern Fibromyalgia and Chronic Fatigue Group
s.bucksfm@gmail.com
7719 180 098
Little Chesney,
2 Holywell Close,
,
LU6 2PB

Dorset M.E. Support Group
help@dorsetmesupport.org.uk
01305 777 670
25 Mariners Way,
Chickerell,
Weymouth,
Dorset,
DT3 4LS

Milton Keynes M.E. Group
adx2enqs@mkmeg.org.uk
01908 270870
26 Avon Grove,
Bletchley,
Milton Keynes,
MK3 7BT

Energise M.E.
cmurphy@blueyonder.co.uk
0117 330 7416
11 Bengough's ,
Horfield Road,
Bristol,
Bristol,
BS2 8EB

Bristol M.E. Support Group
andy.rees@tesco.net
07443 475474
3a Kersteman Road,
Redland,
Bristol,
Bristol,
BS6 7BX

Colchester M.E. Self Help Group
viv.mills@colchester-mesh.org.uk
01206 530 297
Straight Road Community
Centre,
Straight Road,
,
Essex,
CO3 9EF

Northampton M.E. Support Group (NORME)
sharon@slgibbins.wanadoo.co.uk
01604 637 896
139 Lutterworth Road,
Northampton,
Northamptonshire,
NN1 5JL

But You Don't Look Ill
bydlisuffolk@gmail.com
07950 436 584
,
Sudbury,
Suffolk,
CO10 0WD

Mid-Warwickshire M.E. Group
jumpingjuls@hotmail.com
01926 512340
23 Bertie Road,
Kenilworth,
Warwickshire,
CV8 1JP

Welsh Association of M.E. and CFS Support (WAMES)
helpline@wames.org.uk
,
,
Glamorgan, South,
CF10

Peterborough M.E. Support Group
pboromesg@ntlworld.com
01733 203480
18 Nursery Gardens,
Whittlesey,
Peterborough,
Cambridgeshire,
PE7 1TE

M.E. Support in Glamorgan (M.E.SIG)
mesigwales@gmail.com
02920 762 347
73 Llanon Road,
Llanishen,
Cardiff,
Glamorgan, South,
CF14 5AH

Worcestershire M.E. Support Group
worcsmegroup@yahoo.co.uk
01886 888 419
1 The Old School House,
Church Lane,
Martley,
Worcestershire,
WR6 6QA

Solihull and South Birmingham M.E. Support Group
jennylg@live.co.uk
0121 689 0777
59 Cartland Road,
Stirchley,
Birmingham,
Midlands, West,
B30 2SD

M.E. & CFS Self Help Society - Peterborough
info@peterboroughme.fsnet.co.uk
01733 552872
PO Box 775,
45 Elizabeth Court,
Peterborough,
Cambridgeshire,
PE1 4WZ

Herefordshire CFS/M.E./FMS Group
goffies@tiscali.co.uk
01885 482 966
7 Teme Close,
Bromyard,
,
Herefordshire,
HR7 4TP

Salus Fatigue Foundation
info@salus.org.uk
01213 556 853
21 Gate Lane,
Boldmere,
Sutton Coldfield,
Midlands, West,
B73 5TR

Torbay M.E./CFS/Fibromyalgia Support Group
me-cfs-torbay@hotmail.co.uk
01803 554 724
17 Higher Polsham Road,
Paignton,
Devon,
TQ3 2SZ

Walsall and West Midlands M.E. Link
walsallfibroandmelink@gmail.com
Methodist Church,
Ablewell Street,
Walsall,
Midlands, West,
WS1 2EQ

South Molton M.E. Support Group
info@mecfssupportdevon.org.uk
01769 572 207
18 Mole Ridge Way,
South Molton,
Devon,
EX36 3BE

Bourne & South Lincs M.E. Support Group
Leicestersupportme@hotmail.co.uk
01778 425 422
88 Gladstone Street,
Bourne,
Lincolnshire,
PE10 9AX

Elevate
robin.sansom@gmail.com
07538 801 778
69 Humbletoft Road,
Dereham,
Norfolk,
NR19 2RT

M.E. Derbyshire Support Group
via website
01332 864120
6 The Mews,
Potter Street,
Derby,
Derbyshire,
DE73 8LQ

Derby Fibromyalgia Support Group
derby.fibro@btinternet.com
07917 458 033
45 Magellan Way,
Derby,
Derbyshire,
DE24 1AD

M.E./CFS Self Help Nottingham
riedd@btinternet.com
0115 925 2586
17 Harlech Rise,
Chilwell,
Nottingham,
Nottinghamshire,
NG9 5PD

M.E. Support Norfolk
mesnorfolk@btinternet.com
01263 861521
Field View,
23 Melton Road,
Dereham,
Norfolk,
NR20 5DB

Plymouth and District M.E. Group
ruttershome@blueyonder.co.uk
01752 214 856
44 Skylark Rise,
Woolwell,
Plymouth,
Devon,
PL6 7SN

M.E. North Devon Support Group (MEND)
01409 253 191
The Beaches,
Park Close,
Holsworthy,
Devon,
EX22 6HR

Sheffield Yoga for M.E./CFS
sheffieldyogaforme@yahoo.co.uk
0845 582 0112
c/o 36 Psalter Lane,
Sheffield,
Yorkshire, South,
S11 8YN

Sheffield M.E. Group
info@SheffieldMEGroup.co.uk
0114 253 6700
The Circle,
33 Rockingham Lane,
Sheffield,
Yorkshire, South,
S1 4FW

Doncaster Fibromyalgia Support Group
doncastersupportgroup@googlemail.com
0845 458 2110
49 Lime Tree Avenue,
Hyde Park,
Doncaster,
Yorkshire, South,
DN4 5BP

High Peak Fibromyalgia & Chronic Fatigue/M.E.
Support
support@tamesidefibromyalgia.co.uk
0844 887 2363
52 Wood St,
Glossop,
Derbyshire,
SK13 8NL

Stockport M.E. Group
informationline@stockportmegroup.co.uk
0345 519 4116 (24hr voicemail line - run by volunteers)
,
Stockport,
SK4 5BP

Chester MESH (M.E. self help)
Joan@chestermesh.org.uk
01244 370988
35 Grange Road,
Newton,
Chester,
Cheshire,
CH2 2AN

Clwyd M.E. Support Group
clwydme@googlemail.com
01244 547367
,
,
CH5 3NH

Oldham M.E. Link
jean.payne@virgin.net
0161 624 2046
Spring House,
Oldham Road,
Oldham,
Manchester, Greater,
OL4 4QH

Bury and Bolton M.E./CFS Support Group
caroline@mesupportgroup.co.uk
01204 525 955
,
Bury Road,
Bolton,
BL2 6DH

Helston M.E. Support Group
graham.hicks@cornwall.nhs.uk
07795 451 568
M.E. Support Group,
Health Promotion Service,
Redruth,
Cornwall,
TR15 3QE

South Sefton M.E. Support Group
yme_sefton@hotmail.com
0151 284 8447
LINACRE METHODIST
MISSION,
123-129 Linacre Road,,
Liverpool,
L21 8NS

Hull and East Yorkshire M.E. and CFS Group
christine@dmmason.karoo.co.uk
01964 550530
14 Highgate Cherry
Burton,
Cherry Burton,
,
Yorkshire, East,
HU17 7RR

The York ME Community
bill@York-ME-Community.org
,
,
YO1 9QL

Central Lancashire M.E./CFS Support Group
info@clancsme.org.uk
01772 751 254
Howick House,
Howick Park Avenue,
Preston,
Lancashire,
PR1 0LS

Northallerton & District M.E. Support Group
northallertonmesecretary@gmail.com
07949 694 640 (weekdays between 1pm and 6.30pm)
,
,
Yorkshire, North,
DL6 1EE

M.E. North East
info@menortheast.org
0191 389 2222
Bullion Hall,
South Approach,
Chester le Street,
County Durham,
DH2 2ES

Tyne Valley M.E./CFS Support Group
tynevalleyme@gmail.com
0191 414 8895
19 Noel Terrace,
Winlaton Mill,
Blaydon on Tyne,
Tyne and Wear,
NE21 6SD

Tyne & Wear M.E./CFS Support Group
me-cfs@blueyonder.co.uk
0191 455 6959
c/o 25 St Vincent Street,
South Shields,
Tyne and Wear,
NE33 3AR

Carlisle M.E./CFS Support Group
Linda.danielis@talk21.com
01228 562988
Whitecross,
Carlisle,
Cumbria,
CA4 0ED

Newcastle Fibromyalgia Support Group
newcastlefibro@gmail.com
0844 887 2433
The Oxford Centre,
West Farm Avenue,
Newcastle upon Tyne,
Tyne and Wear,
NE12 8LT

Newry and Mourne M.E./FMS Support Group
joanmcparland@live.co.uk
07712 892834
25 McShanes Rd,
Bessbrook,
Newry,
Co Down,
BT35 7LZ

West Lothian Fibromyalgia Support Group
secretarywlfibro@gmail.com
0844 887 2388
West Calder Community
Education Centre,
Dickson St,
,
EH55 8DZ

Edinburgh M.E. Self-Help Group (EDM.E.SH)
info@edmesh.org.uk
0845 625 2025
14 Harden Place,
Edinburgh,
EH11 1JB

Falkirk M.E. Self Help Group
richard.zak@blueyonder.co.uk
01324 871 480
Thistlebank,
51 Dalgrain Road,
Grangemouth,
Stirlingshire,
FK3 8HN

Paisley and District M.E. Support Group
theresa@me-paisley.co.uk
0141 533 5774
Disability Resource
Centre,,
74 Love Street, ,
Paisley,
Renfrewshire ,
PA3 2EA

Perth M.E. Support Group
elibmon@gmail.com
01764 654 725
The Grampian Hotel, ,
37 York Place, ,
Perth ,
Perthshire,
PH2 8EH

M.E. & YOU Aberdeen
gregor.mcabery@mac.com
01224 581 162
Eslie Croft,
St Katherines,
Inverurie,
Aberdeenshire,
AB51 8ST

 

[batteredoldbook]

£12M / 250,000 = £48 per UK person with M.E
The real lesson from MEGA is that if we each put in £48 we could fund any biological research we want.
#OpposingMEGA

 

[Deepwater]

Could a case be made to trading standards for false advertising as it is using our taxes to fund it?

At the very least, I should think. And does the medical profession itself not enforce some standards in these matters? Also look how they call it a neurology clinic in order to fool prospective patients. I've had similar ruses pulled on me in UK "specialist" centres. You are booked to see an endocrinologist, rheumatologist or neurologist, and you have hope at least, only to discover they have no intention of treating your illness as any sort of biological - they run a few standard tests, jeer at you and then try to put you forward for GET.

 

[Dx Revision Watch]

The two PDFs a couple of us have posted are flyers, one for GPs, one for paediatricians.

I've just checked to see what the ASA's Codes now cover:

https://www.asa.org.uk/Consumers/What-we-cover.aspx

What do the Codes cover?
The UK Code of Non-broadcast Advertising, Sales Promotion and Direct Marketing (CAP Code) applies to advertisements across media including newspapers, magazines, billboards, posters, leaflets, mailings, e-mails, texts and on UK based company websites.

We deal with most types of ads but not all. If we can’t deal with your complaint ourselves, we will try to help you contact the right body.

https://www.asa.org.uk/Consumers/What-we-cover.aspx

The types of ads we deal with include:

• Magazine and newspaper advertisements
• Radio and TV commercials (not programmes or programme sponsorship)
• Television Shopping Channels
• Advertisements on the Internet, including:
  • banner and display ads
  • paid-for (sponsored) search
  • Marketing on companies’ own websites and in other space they control like social networking sites Twitter and Facebook
• Commercial e-mail and SMS text message ads
• Posters on legitimate poster sites (not fly posters)
• Leaflets and brochures
• Cinema commercials
• Advertising within smartphone and tablet apps
• Direct mail (advertising sent through the post and addressed to you personally)
• Door drops and circulars (advertising posted through the letter box without your name on)
• Ads on CD ROMs, DVD and video, and faxes
• Sales promotions, such as special offers, prize draws and competitions wherever they appear.

https://www.asa.org.uk/Consumers/What-we-cover/Complaints-outside-remit.aspx

Areas of complaint outside our remit

[Refer to URL above for list of areas outside remit]


As a non commercial flyer, I'm wondering whether patient and professionals' materials associated with NHS based research studies would come under the scope of the ASA, or whether this is the responsibility of another agency, eg Research Ethics Committee and Medical Ethics bodies for research using children.

The study was approved by South West – Frenchay Research Ethics Committee.

The Sponsor is Research and Enterprise Development, University of Bristol,

Several Netherlands universities are involved.

This is not the same situation as Phil Parker's website ASA ruling for a commercial product or service, in Parker's case, a "training" programme costing over £600.

Perhaps Dr Edwards could clarify whether a complaint to the Ethics Board or other medical ethics body is appropriate - rather than a complaint submitted to the ASA?

 

[Barry53]

Can't figure if this is a good or bad sign.

Extraordinary just how blatant they are being of late, especially Crawley.

Personally I find it encouraging - that it is often a sign of such people getting rattled. Their normal habit (IMHO) is to lurk in the shadows and manipulate others to do their dirty work for them, and tend only to move out of the shadows when things start falling apart, feeling driven to take bigger risks and expose themselves more.

 

[dyfalbarhau]

Personally I find it encouraging - that it is often a sign of such people getting rattled. Their normal habit (IMHO) is to lurk in the shadows and manipulate others to do their dirty work for them, and tend only to move out of the shadows when things start falling apart, feeling driven to take bigger risks and expose themselves more.

The way I look at it is that the more ridiculous the claims they make become, the more satisfying it will be to see it all fall down.

 

[Jan]

What makes me laugh is that NICE won't recognise research from overseas for nice guidelines, but Fitnet is completely based on a Dutch study, ffs, talk about double standards!

 

[Jan]

I think we need some people to 'picket' Bristol uni, hand out flyers saying why we oppose the fitfornothing trial. We need to kick up a fuss to somehow get on the local news at least. No one is listening to us, it's looking increasingly like we need to take some sort of further action. Maybe a poster campaign?

I think we should be sharing our concerns with the MRC, NHS England, the research standards people and every source of media. We need some sort of massive organised campaign, maybe with ME Action involved if poss. PACE is a fraud, now it's being carried out on the most vulnerable people in society via magenta and fitfornothing. We can't stand by and do nothing.

 

[Jan]

Is any one well enough to do any of these though? I'm starting to think we need to raise some funds for some kind of action or PR.

 

[lilpink]

Or do they really have so much political protection that they know they can continue acting like this with impunity?

The scientific community outside the UK is increasingly watching the goings on with particular respect to ME research and the political football it has become and are astonished at the ineptitude on show. The UK is a laughing stock. The PACE Trial being used as an example to teach students in other parts of the world how not to do 'science'. Surely this situation undermines the profile of the UK in terms of science and technology in general... I for one would like to think there might be enough traction within the UK scientific community amongst those who are disturbed by this to challenge this absurd situation as it reflects so badly on them?

 

[Barry53]

You couldn't make this shit up.

I beg to correct: EC does it consummately .

 

[Barry53]

As a non commercial flyer, I'm wondering whether patient and professionals' materials associated with NHS based research studies would come under the scope of the ASA, or whether this is the responsibility of another agency, eg Research Ethics Committee and Medical Ethics bodies for research using children.

Is this an option:-

If we can’t deal with your complaint ourselves, we will try to help you contact the right body.

 

[Dx Revision Watch]

Chief Investigator Dr Esther Crawley

Co-investigators Professor William Hollingworth (University of Bristol), Dr David Kessler (University of Bristol), Professor John Macleod (University of Bristol), Dr Chris Metcalfe (University of Bristol), Dr Nicola Mills (University of Bristol), Professor Paul Stallard (University of Bath), Mrs Harriet Downing (University of Bristol), Dr Elise Van de Putte (UMC Utrecht), Dr Sanne Nijhof (UMC Utrecht), Associate Professor Hans Knoop (Radboud University Medical Centre), Professor Gijs Bleijenberg (Radboud University Medical Centre), Mrs Mary-Jane Willows (The Association for Young people with ME), Dr Simon Price (University of Bristol)