M E cure sky news (plz JOIN MY facebook page x)

[shinninglight100]

I am so looking forward to there being a cure it is 2011 hopefully not long to go, it is the 21st century, surely science must be improving.

[1952YOU1320TUBE1952]

@shinninglight100

they don't want to find acure same with cancer there are cures out there but are suppressed by Big Pharma and government,so don't hold your breath.

google "cancer the forbidden cures tpuc" to see for your self

and a main stream TV video on you tube called BAYER EXPOSED to see what your dealing with

[thesexyboi]

facebook.com/home.php?sk=group­_167508819927451 

[thesexyboi]

plz join it and show support x

[1marknz]

I have had CFS for 10 months now and it isn't nice. I used to bike ride 80km everyday but now I can't even go for a 12 minute walk without ending up in bed for 3 days, this is horrible I really wish I could get my life back, and the worse thing is that heaps of people don't believe me I am 22 years old.

[DadsBlueAngel]

This is probably true, but the misdiagnosed are in hell in your country. I do not believe CFS exists as a primary psychiatric or psychological disease as these terms are used to day. Barbarities have been committed in the name of treatment, as with the paralysed boy thrown into the deep end of the swimming pool by his evaluating team. Britain has actually returned to ducking.

[thesexyboi]

@DadsBlueAngel what the hell you on about??

[FreeBritain1]

And I'd just like to add here that not one penny of gvmnt funding goes towards M.E. research. The suffering is 'gross' and now we have the threat of the most dangerous 'Right to Control', welfare reforms. Dear oh dear. We already live on the brink of survival.

[FreeBritain1]

Well 7 years on, I'm an excellent Manager of M.E. and I've crashed again, in agony.

Hoping to get a course of Prednisolone (which does the trick) to settle things back down again, but it's the weekend so no G.P. and the most helpful one is on long term sick, bless her. Managed to get some Tramadol from weekend doc. (who was gentle and kind, so no abuse for a change), but it's not really touching the pain. I need morphine.

[martimotion]

@FreeBritain1 , Hi, i have spent most of my life with servere problems (from about 13 yrs old/puberty etc, I am now a couple days short of 33!) following a whole load of awful events & at that time also a barrage of inoculations/vaccine to go out to africa. 1st symptoms were diabeties like with every school nurse testing for it & drs etc but thats as far as they went..come 16-18ish things got much worse nuero sypms/pain ++ got no help/belief so i ended up self medicating so got treated like sht

[martimotion]

@FreeBritain1 ended up shooting myself in the head & survived following shrinks/drug councillers / serious negligence which continued right down to no follow up (medically, though plenty of antipsychotics blah blah...) after the serious head injury & attempted removal of projectile etc. 5 yrs ago this thing took me right off my feet & out of life. anyhow now have diag cfs & god dr but re morphine: i'm on 2 1\2 gram bd mst + 1.2 g fast morph + others but still is not greatly helpfull & has probs

[martimotion]

@FreeBritain1 but its obviously an improvement on tramadol!! but it really does have so many down sides. i was untill recently (through my pain consultant & gp) on a drug called diconal along side which improved my pain/life a lot (it sadly has been withdrawn for now aparantly thanks to pharm advisors (reps???) at my gps practice but i will be fighting to get that sorted), basically i sugest you ask about this drug & get a pain consultant referal asap. scuze life story hope you get help/life, mx

[GMPresents]

What a typical presenter - only focusing on the money issue. WHAT ABOUT THE CURE! That's what sufferers are concerned with. General news = bullshit.

[PostHuman2113]

The bastards were on GMTV a couple of years ago, calling it "Chronic fatigue and illnesses like that.."

My answer is this, "What, Multiple fucking Sclerosis and AIDS"???

Don't ever DARE to underestimate the seriousness of this illness in its true form.

There will be repercussions for this ill treatment and abuse.

[gemini222ify]

ive had it for years but i like mickel therepy. i think dr. mickel understands the illness and hope he can get his treatment on the nhs like he's trying to.

to anyone who is bed bound, i remember those years, it was hell but it gets better.

[karmakomodia]

@gemini222ify Tried Mickel Therapy.. Although the intentions were sincere.. Mickel therapy is A Psychological approach to assist one with possible emotional blocks. Myalgic Encephalomyelitis is NOT an emotional illness..it is a BIOLOGICIAL Disorder..One may benefit from Mickel Therapy for a wide variety of reasons. But the illness is ORGANIC...not pyschosomatic. If Mickel therapy can cure M.E. then it can CURE BLINDNESS.! No reports about the BLIND being given sight!!!

[ShowalterdontlikeME]

"Is Britain leading the way or lagging behind?"

"In Europe we lead the way!"

Overtime for Winston Smith tonight.

[DysautonomiaMD]

Hope this increases understanding, especially with those who are bed-bound and unable to walk. Brain and tissue bank? That is a significant start...thanks for keeping us informed. The whole world is watching to see how we are treated.

Highest Personal Regards, Dr M

[zefrongurl4567]

i soo want a cure 4 me, cfs!

i am soo sick of the illness!!! i want a cure :-(

i have ahd it 4 4 years and its sooooooooooooooooooooooooooooo­oooooooooooooooooooooooooooo

horrid!!!!

oh well, =)

guess u have 2 smile thro whatever soo =)

[setneg]

thanks for the vid

[simontristan]

They have not got a chance in hell of finding a genetic cause. If something is genetic it cannot be cured except by technologies that are some 20 years away.. I think the cure is already there and will become more available when the medical and psychiatric professions stop hijacking patients suffering from this illness which has mostly a physical cause in a vast majority of patients

[charlesUK]

Simon

You appear to misunderstand the gene expression research that the MEA is funding.

The purpose is to find out whether genes that control cellular activities in all human tissues have been 're-programmed' as a result of a triggering infection.

Initial results from this study, published in BMC Medical Genomics, indicate they are. This could now lead to both a diagnostic test and effective forms of treatment.

The paper can be found in the news archive (25 June) on the MEA website.

CS

[djcondra]

I know it is frustrating how slow progress is, but I get the impression there is more positive and valuable progress being made more recently than ever before.

[rainbowchild2009]

I wonder how long it will be now before you can actually have a diagnostic genetic test done?!

[charlesUK]

A reliable diagnostic test based on this type of gene expression research is still some way off - years rather than months .

The same applies to specific forms of treatment that need to be tested - but ideas and proposals are being discussed.

There is still a lot more work to be done by this and other groups (eg Dr Kerr) working in the same area. Progress will also depend on whether these very encouraging preliminary results can be consistently replicated elsewhere.

Charles Shepherd

[rainbowchild2009]

Dr Shepherd,

Thanks very much for taking for taking the time to reply, I guess allot now depends on how much funding the MRC will provide to help fund studies to replicate and continue studies like these.

I know they have set up a new ME/CFS research panel of scientists so lets hope they are serious about kick starting biological research and have turned over a new leaf in doing so.

[charlesUK]

Yes, there has been a significant shift at the MRC with the setting up of an Expert Group on ME/CFS, which is chaired by Prof Stephen Holgate. Dr Jonathan Kerr and I are members, as is Prof Jill Belch, who works with MERUK in Dundee.

We are holding a meeting in November to review the state of ME/CFS research and look at where to go next. The aim is to bring in new researchers and new ideas.

For membership of the MRC group, plus a March meeting summary > May ME Essential magazine (p16).

CS

[fogggygyrl]

That's good to hear that there really are companies willing to accommodate PWME. Thanks for your prompt reply Dr. Shepherd. We're lucky to have you on our side. :)

[fogggygyrl]

I do want to thank you Dr. Shepherd for all of your hard work in ME. You are a hero for us. :)

[fogggygyrl]

It's absolutely frightening that the UK is leading the research in ME in Europe given how abysmally ME patients are treated there. Tell me, what employer is actually accommodating ME patients? I'd love to know.

[charlesUK]

There may not be many but there are a few employers who do all they can to keep people with ME in work - if the person concerned is still in a position to be able to do some limited or flexible work.

I did a training course for the Nationwide Building Society last year and all the feedback I have had about this particular employer has been excellent.

But I won't start naming the employers who just want sick/disabled employees out the door as quickly as possible....

CS

[ptharcourt]

hear, hear!

[charlesUK]

Thanks for the support!

If anyone wants to support the MEA/RRF research programme, which is currently concentrating on brain and muscle abnormalities, donations to the RRF can be made in several ways.

Ed Stafford is walking the entire length of the River Amazon (450 days so far) and has raised over £5,000 for post-mortem research.

The JustFourQuid campaign aims to raise regular small amounts for the RRF and MERUK - with whom we co-operate.

More info can be found on the MEA website.

CS

[Bluebottle83]

Thanks Dr Shepherd, keep up the excellent work!

[Bluebottle83]

Dr Shepherd, most people with M.E. really appreciate the hard work that you do for us. Well done on your interview & for your years of campaigning for biomedical research & treatment.

Please do not allow yourself be bullied by attention seeking weirdos.

[charlesUK]

A provisional abstract and paper covering Prof John Gow's research into gene expression in ME/CFS, that has been funded by the MEA Ramsay Research Fund, has been published today.

More details on these important research findings, which have implications for both a diagnostic test and specific forms of drug treatment, will be available on the ME Association website shortly.

Charles Shepherd

[Bluebottle83]

Thank you Dr Shepherd.That's wonderful news. Has Dr Gow's research, like Dr Kerr's, been refused funding by the Medical Research Council?

(The Medical Research Council allocate tax payers money for medical research. They have so far given all or nearly all the research funding for M.E. to psychiatrists., despite the fact that he World Health Organisation classify M.E. as a neurological illness and the government stated in parliament that they accept M.E. is a physical illness.)

[charlesUK]

I don't have my research files to hand but I think I'm correct in saying that this particular piece of research was not submitted to the MRC.

Charles Shepherd

[charlesUK]

An abstract of this 'ME/CFS gene signature' paper is now available on the MEA website (news section).

There is also a link to the full (provisional) paper, which has been published in BMC Medical Genomics.

CS

[ptharcourt]

Thank you for your efforts to raise public awareness of ME. Even getting a small article in a local paper is hard enough so congratulations on getting something shown on a major news channel.

[action4change4me]

There was a serious problem with Dr. Gows genetic research funded by the MEA which did not get anywhere in the end, but due to some of these problems some £23,000 was unable to be accounted for which is one of the reasons why the MEA had to change their auditors because the MEA had no effective scientific, medical or financial monitoring or control over a project they owned during the period they were the sole or primary funder and were responsible for all, or nearly all aspects of the project.

[Dandelionity]

Take a look at the "Just Four Quid" campaign to raise money for biomedical research into ME/CFS (Google & you'll find it) - it's a daily blog that gives you a moneysaving tip each week and the idea is that if you save say £10 with that week's tip you might donate £5. It aims to raise £1 million in a year for ME Research UK & the Ramsay Research Fund. Govt doesn't fund this, we must! Join in!

[action4change4me]

This campaign is fronted by an anonymous blogger under a franchise from the MEA who claims to have ME, and claims to be a scientist which is the basis of the anonymous endorsement of campaign; but is it true, neither MEA nor MERUK will answer questions about their fund raising through it; and they are refusing to be transparent and accountable for the operation of the anonymous blog, which does not meet the standards required by the Fundraising Standards Board.

[action4change4me]

There are also very serious long standing questions over the operation of the MEAs Ramsey Research Fund in terms of the way in which grants are elicited, awarded and monitored without much if any meaningful paperwork and the way in which the MEA refuses to be accountable for the operation of the fund by publishing their grants alongside the work that was carried out with the grant funding they awarded to the project concerned.

[charlesUK]

Ciaran

You are posting total nonsense yet again.

The very important research findings from this MEA/RRF funded gene expression study have been accepted by a peer reviewed scientific journal and should be published within the next few months.

Your allegation regarding the financing of this study is completely untrue.

Why on earth do you do all this harmful mischief?

Dr Charles Shepherd

Hon Medical Adviser, MEA

[action4change4me]

Charles

You have made the claim that the research will be published soon previously, and it has not been; therefore I call on you to prove your claim by stating the journal and title of the paper. You claim that I am making mischief that is not true; I am challenging you and the MEA in the public interest over serious issues related to the way in which you administer the Ramsey Research Fund on behalf of the MEA. That as an MEA Trustee you are responsible for this money - fact

[action4change4me]

The MEA did change auditors fact The MEA had to delay the subsequent AGM due to accounting problems fact The MEAs accounting problems were located within the Restricted fund fact. The problems were with research grant funding fact. The sum of money involved was some £23,000 fact The problem was with the grant concerned fact these facts are all provable through documentary evidence including the MEAs own accounts - fact

[charlesUK]

Ciaran

Changing auditors was an amicable commercial decision taken some time ago. It had nothing to do with the research fund. There isn't a problem with the research fund.

The Glasgow researchers were paid exactly what had been requested for their study into gene expression - which aims to develop a diagnostic test and new forms of treatment.

A paper on gene expression has been submitted and accepted. This assurance will remain on record here for anyone to check.

Dr Charles Shepherd

[action4change4me]

Charles

I note you sign your assurance is in a personal capacity and not on behalf of the MEA. You do not state the journal and title of the paper you claim is shortly to be published because you cannot do so as has been the case in the past over this claim of yours. The MEA did take a commercial decision to change auditors based on the willingness of a firm of new auditors to take the MEAs word for the mess it got into over research funding.

[action4change4me]

Charles

The researchers made various requests at various times in various ways and the MEA did not know how to properly or adequately deal with them due to the lack of proper system of administration of research money and the lack of project monitoring and accountability of the researchers to their MEA funders, as you well know, so please do not evade the issue!

[charlesUK]

Ciaran

Do you not realise how damaging it is to denigrate research when you have not seen the results or even bothered to read the preliminary findings that were presented to the conference in Japan last year (and reported in detail on pages 14 - 15 of ME Essential, November 2008).

The University, the research group, and the MEA are all very happy with the gene expression research. The audited research accounts were presented without any problems to our AGM this week.

Dr Charles Shepherd

[action4change4me]

Charles

I have read what information is available to me in the public domain and the report about the project when I was an MEA Trustee. The conference you refer did not contain a Eureka moment in which the researchers claimed success in their endeavours; they only said that they will continue to try to make the project work. As you very well know I was referring to a previous AGM which was delayed due to the change of auditors and not the most recent MEA AGM.

[action4change4me]

Charles

You are accusing me of undermining the efforts of the researchers in order to obfuscate matters! You have still refused to state the title of the paper and the journal in which it would be published by the researchers in order to substantiate your claim that the research has been successfully concluded! I note you have signed your posting again in a personal capacity and not on behalf of the MEA.

[action4change4me]

Charles

The issue here is the legitimate public concern of the mal-administration of the Ramsey Research Fund by you as the MEA Trustee with portfolio responsibility for the administration of the funds concerned on behalf of the MEA not my views on research, please deal with the actual issues instead of continuing to obfuscate matters

[charlesUK]

Ciaran

People on YouTube are not interested in your on-going obsession with the internal workings of the MEA.

If you have complaints about our audited accounts for a previous year, raise them with Companies House.

We are about to publish a new leaflet on the Ramsay Research Fund. This will include information on all the research we have funded, are funding, and where the results are published. I will ask if the name of the journal can be included pre publication of the gene paper.

CS

[action4change4me]

Charles

People on this Channel are interested in ME research as the clip on this site features you talking about research shows. The question is whether the MEA is fit to carry out ME research and whether you are a fit person to administer that research through the Ramsey Research Fund.

If you do publish the leaflet you claim you will through the MEA then this will indeed be a first and testament to the power of U Tube lobbying!

[charlesUK]

Ciaran

Yes, people want to know about research - but don't want defamatory attacks on those involved.

Besides gene expression in Glasgow, the MEA is funding research into muscle abnormalities and is trying to set up a brain and tissue bank for ME research. I recently visited Prof James Ironside and the MRC brain banks in Edinburgh to take this forward.

The MEA info leaflet on research we fund is already available via the MEA website. An updated and enlarged version is being prepared.

CS

[action4change4me]

Charles

You know very well that the PDF documents available via the MEAs Website do NOT match the research that the MEA approves of with MEA grants made to researchers and research projects. Therefore donors to the Ramsey Research Fund, MEA members and the ME community cannot see when where and how the MEA spends its research money. Therefore both you and the MEA have yet again failed to be open, honest & transparent or accountable to MEA donors members and the ME community!

[charlesUK]

Ciaran

As you know, I do all this work for the ME Association on a purely voluntary basis and it takes up many hours each week.

Instead of constantly complaining and denigrating what is being done by the ME Association can I ask what you are doing to initiate and fund biomedical research into the underlying physical cause of ME?

Charles Shepherd

[action4change4me]

Charles

The RRF constitution point 5 states that Trustees Must not misuse information for personal gain, nor seek to promote their private interests or those of connected persons or organisations you are in breach of this as you refuse to accept the fact that the documents that The RRF documents available via the MEAs website do not match research approved of by of the MEA to research grants so donors MEA members and the ME community cannot see when where and how you spend their money

[action4change4me]

Charles

I do not control research funds, you do through the MEA. The issue is the way in which you as an MEA Trustee administer these funds in the public interest of MEA members donor and the ME community and the general public. It is therefore not a matter of your denegation allegation against me; it is a matter of your probity in public office being accountable for the spending of public money in the public interest.

[charlesUK]

Ciaran

1 The RRF is ring fenced - so all donations, which appear in the monthly accounts, go into a separate bank account.

2 There are no staff salary or admin costs - so all money is used for peer reviewed research activity, and approved by trustees.

3 All research activty is discussed at Board meetings. The MEA is the only ME charity to publish a summary of meetings within days of them taking place - see MEA website.

4 Name the research that we are not telling our members about

CS

[action4change4me]

Charles

You know very well that the PDF documents available via the MEAs Website do NOT match the research that the MEA approves of with MEA grants made to researchers and research projects. Therefore donors to the Ramsey Research Fund, MEA members and the ME community cannot see when where and how the MEA spends its research money. Therefore both you and the MEA have yet again failed to be open, honest & transparent or accountable to MEA donors members and the ME community!

[action4change4me]

Charles

Due to the lack of transparency and accountability none of your assertions are verifiable. The Board of Trustees Summaries are not minutes and they are written by you. I repeat the simple fact that you very well know that the PDF documents available via the MEAs Website do NOT match the research that the MEA approves of with MEA grants made to researchers and research projects. Therefore it is a fact that you and the MEA are refusing to be open honest transparent and accountable.

[charlesUK]

Ciaran

I do not understand what you are on about - and suspect that everyone else is equally confused.

For the umpteenth time:

All major research grants are detailed in the pdf documents.

All research we are currently funding, or considering funding, is discussed at Board meetings and reported in the internet summaries. Nothing to do with research is omitted.

So can you name one single piece of RRF research that we are funding/have funded that we have not informed our members about?

CS

[action4change4me]

Charles

You refuse to accept 2 simple facts; you know very well that the PDF documents available via the MEAs Website do NOT match research the MEA approves of with MEA grants given to researchers and research projects so donors to the Ramsey Research Fund, who are MEA members and the ME community cannot see when where and how their money is spent by you on research. You and the MEA are not being open honest & transparent or accountable to donors members and the ME community about this!

[charlesUK]

Ciaran

The information on the MEA website states:

1 Who gets the money

2 Where they work

3 When the findings are published - usually within a year or so of completion

4 What was done - in the form of key findings.

In the interests of transparency I'm happy to answer questions on any of the research studies that we have funded or are currently funding.

CS

[action4change4me]

Charles

You refuse to accept 2 simple facts; you know very well that the PDF documents available via the MEAs Website do NOT match research the MEA approves of with MEA grants given to researchers and research projects so donors to the Ramsey Research Fund, who are MEA members and the ME community cannot see when where and how their money is spent by you on research. You and the MEA are not being open honest & transparent or accountable to donors members and the ME community about this!

[action4change4me]

Charles

You are still refusing to accept the simple fact that you know very well that the PDF documents available via the MEAs Website do NOT match research the MEA approves of with MEA grants given to researchers and research projects so donors to the Ramsey Research Fund, who are MEA members and the ME community cannot see when where and how their money is spent by you on research because vital information has been withheld.

[action4change4me]

Charles

You are still refusing to accept the simple fact that You and the MEA are not being open honest & transparent or accountable to donors members and the ME community about this! Donors MEA members and the public have a right to know how you spend the MEAs research money. In the wake of the MPs expenses scandals in UK Parliament your position is untenable and you do not have public support for withholding from the public information the public has a right to know!

[charlesUK]

Ciaran

My offer to have a constructive discussion with anyone who wants to ask a sensible question about any of the research that the MEA/RRF is funding - brain, muscle, gene expression, diagnostic tests, severe ME etc - remains. But there is clearly no point in trying to do so with you.

Instead of constantly making unfounded allegations and denigrating what we are doing, why don't you set up your own ME patient support and research charity and do something positive for a change?

CS

[action4change4me]

Charles

You are still refusing to accept the simple fact that You and the MEA are not being open honest & transparent or accountable to donors members and the ME community about this! Donors MEA members and the public have a right to know how you spend the MEAs research money. In the wake of the MPs expenses scandals in UK Parliament your position is untenable and you do not have public support for withholding from the public information the public has a right to know!

[action4change4me]

Charles

You are still refusing to accept the simple fact that you know very well that the PDF documents available via the MEAs Website do NOT match research the MEA approves of with MEA grants given to researchers and research projects so donors to the Ramsey Research Fund, who are MEA members and the ME community cannot see when where and how their money is spent by you on research because vital information has been withheld.

[action4change4me]

Charles

Given the lack of transparency and accountability of you and the MEA over the Ramsey Research Fund to donors, MEA members and the ME community there is little that can be said about your various assertions in your last posting since they are simply unverifiable! What can be said is that there are various issues with various research projects due to the MEAs management of them due to the long standing structural problems within the MEA.

[charlesUK]

Ciaran

1 The RRF Explained pdf lists all major research funding in recent years, the main findings, and where results were published.

2 The RRF Constitution pdf explains how the fund operates.

3 A two page article in May ME Essential explains all the work we are doing re brain bank and tissue research.

4 The same issue has a summary of the last meeting of the Medical Research Council Expert Group - of which I am a member - on ME/CFS research and info on our November conference.

CS

[action4change4me]

Charles

The Ramsey Research Fund documents available via the MEAs website do not match research approved of by of the MEA to research grants so donors MEA members and the ME community cannot see when where and how you spend their money FACT

Therefore it is a FACT that you and the MEA are not being open honest or accountable about this matter

[fogggygyrl]

"I do wish Dr Shepherd had mentioned that M.E. can be so bad some sufferers spend decades in darkened rooms unable to talk or even swallow, and that people have actually died of M.E."

Good point Bluebottle. I agree this should be mentioned. It's great to see such a good news segment on ME in Britain.

[Smarties009]

i have M.E i hope they can cure it :D

[luminescentfeeling]

Good video, thanks for uploading, how sad this is 20 years too late, and even later for people who've lost their lives.

Interestingly Charles Shepherd doesn't mention the MRC block all biomedical research into ME, and the NHS/DOH have not funded one penny into ME that is non psychiatric.

Luckily Dr Kerr and the ME assoc DO research ME, but it's all privately funded.

If only we had more research.

[action4change4me]

There was no contract or memorandum of understanding between the researchers and the MEA which set out the responsibilities of both parties and what could and should be achieved in a given time with a given amount of money. MEA was the main funder all aspects of the project came down to them in the end, but they did not have the requite organisational structure or policy portfolio or expertise to manage the project, and neither did they see the need for them, hence the problems.

[Bluebottle83]

Thank you so much for posting this.

Although he gave a very good interview I do wish Dr Shepherd had mentioned that M.E. can be so bad some sufferers spend decades in darkened rooms unable to talk or even swallow, and that people have actually died of M.E.

One day biomedical research will prove the psychiatrists who have had a stranglehold on our physical illness for over 20 years , and who work for medical insurance companies, are very wrong to insist that it is a psychological disorder.