ITV This Morning, Vikki George and Dr Charles Shepherd Severe ME awareness

[wendytoesocks1]

well done vikki on your path to recovery hope it continues ;-) xxx

[fogggygyrl]

I'm suffering beyond belief every minute. I can't understand why this hasn't killed me yet. Thanks for asking. How are you doing these days Vikki?

Hugs,

fogggyrl

[Schhmaamy]

i must have missed this on this morning! you were very brave to do that and i thank you for trying to make it more known and helping others! you are an inspiration!

[vikkkilouise]

Thank you :)

[NodoakaHachidori]

A great interview to get across what ME is really like. Well done Vikki and thanks for doing this.

[vikkkilouise]

Thank you :)

[FreeBritain1]

Please pray for the protection of the disabled and sick, during the current process of change, from media propaganda, the gvmnt and intimidation. They are a frightened and targeted minority and they are in great need of protection. Christ is with us. Thank you and God bless x

[fogggygyrl]

Vikkki's explanation of YUPPIES right. It was a term derived for the young people of the '80s much like the term HIPPIES was for the '60s. YUPPIES means Young and Upwardly Mobile People. Oh, if only I could be that.

[fogggygyrl]

Vikkki, thank you for explaining that directly after your appearance here you had to don shades (notice it's wintry outside the window) and go from a wheelchair to a car where you then had to lay down for the trip home. That's very telling.

Ever since I saw this video, I think of what kind of "exercise" you have been doing to get this much better and it has encouraged me greatly as I am bedridden 95% of the time myself.

Hugs and Wellness to you.

fogggyrl

[vikkkilouise]

Hi Foggy girl, I was wondering how your doing? I hope you have picked up a little. Lots of love, Vikki

[Snowberry23]

Whats "Yuppie"?

:s

[vikkkilouise]

Yuppie's was a term in the 1980's for high flying business peopl in their early 20's, clever and get far in life, work hard and play hard. The term Yuppie flu came about as its thought that people living that lifestyle would burnout as you can't maintain it. Not exactly the same as getting a neurological illness, but i dont take offense at the term, theres worse things to be associated with that inteligence and hard work!!

[Snowberry23]

Ah... Thank yooo :D

[ImHollieWood]

I dont care what you call it as long as people believe it is REAL and we need HELP.

[fogggygyrl]

I just realized after reading the comments that Dr. Shepherd has ME as well.  He's one of us! Gee, and he looks perfectly healthy as well.

[fogggygyrl]

See how well she looks? That's how well most PWCs look. That's a big part of our problem. We look good or at least well.

[vikkkilouise]

No, nor did they see as soon as the camera went off i transfered back into my wheelchair, on went my sunglasses and had to lay down on the sofa in the green room before getting in the car (laying down) for the journey home to my blacked out room

[thenbman]

thanks dr shepherd for going on tv this illness needs to get out in the open as much as pos. i do think your wasting your time arguing with action4change though. in my view i couldnt care less what people call "ME" as long as its recognised as a neuro problem or at least affecting the brain without it been pychological (having a bad spelliing day).

[robneal110]

I suffer from Myalgic Encephalomyelitis and the inflammation of my central nervous system is pretty obvious to me, anyone who knows me and my osteopath. After exercise my back and head hurt, the heat can be felt and I come out in spots all down the spine. I believe that in the future it will be found that we have chronic persistent infections that needs abx and anti-viral treatment and we will look back on Dr Shepherd with a sense of bemusement that he was the most progressive back then.

[charlesUK]

Have you ever read what I say/do re these issues?

Having had a chickenpox encephalitis I'm very keen to explore the possible role of antiviral drugs in ME/CFS subgroups. I've been involved with an acyclovir trial and recently met Roche to discuss research into valganciclovir.

Most doctors will not accept the term encephalomyelitis - so we need post-mortem research to look at the brain and spinal cord. In the meantime what's wrong with using encephalopathy, a term which is acceptable.

CS.

[paganstarchild]

Thank you Dr Shepherd for this, My husband has ME/CFS and I have fibromyalgia, my husband went from healthy and fit to wheelchair in 4 weeks. For both of us it is exhausting and we worry over our children if there is any possibility of it having a hereditary trait.

[charlesUK]

Ciaran

As you know, I spend a significant part of my time dealing with post-mortem research issues and the MEA tissue bank initiative..

We just do not have the necessary evidence from autopsies to say that people with ME have inflammation in both their brain and spinal cord (ie encephalomyelitis).

If the clinical, investigative and research evidence was there in the medical literature, doctors would be happy to use the term encephalomyelitis.

Dr Charles Shepherd

Hon Medical Adviser, MEA

[charlesUK]

Ciaran

The ME Association initiates and funds research into neurological and muscular function in ME/CFS - this includes post-mortem research. None of these MEA studies have confirmed that we are dealing with an encephalomyelitis.

I have therefore suggested that encephalopathy is a more appropriate term to describe the neuro abnormalities that have been found.

Encephalopathy is not a psychiatric description and doctors are willing to use it.

Dr Charles Shepherd

Hon Medical Adviser, MEA

[action4change4me]

Both Charles Shepherd and the MEA refuse to believe the evidence of their own eyes when looking at their own research, therefore they have refused to face the facts on this matter. They have also refused to face the fact that the opathy appellation for ME that is not an official WHO medical term and it is not official medical term or description for anything medical at all fact.

[action4change4me]

Charles Shepherd and the MEA have sought to collaborate with the psychiatric lobby by introducing the null, void and empty term of Opathy in order to compromise and therefore surrender to the psychiatric lobby over the physical nature of ME which is correctly termed Myalgic Encephalomyelitis as listed in the WHO ICD 10 and recognised as a Neurological Disease by the WHO since 1969.

[action4change4me]

The reason why Opathy is used by a few medical and scientific researchers and on occasion by the Dept of Health is because Charles Shepherd and the MEA have campaigned to make an unacceptable term usable because it is used by a patients charity. This has caused a great deal of damage to the status and standing of ME sufferers and carers.

[charlesUK]

Ciaran

Doctors and researchers often refuse to use the name ME because there is no firm pathological evidence of widespread inflammation involving both brain and spinal cord (= E/encephalomyelitis).

I proposed the term encephalopathy because it describes the well recognised neurological symptoms and abnormalities in brain function that have been identified - it has therefore become acceptable to many doctors and the Dept of Health.

But people are free to choose whatever name they want.

[action4change4me]

The reason why doctors and researchers and the Dept of Health sometimes use the appellation opathy is because they do not want to acknowledge ME as being a physical neurological disease as defined by the WHO at G93.3 in the ICD 10 Classification system that is binding and mandatory in the UK. Opathy is not a WHO sanctioned name or medical term, nor is it a proper medical term fact.

You and the MEA have made matters much worse for all of us by playing into their hands!

[action4change4me]

You have commissioned research through the MEA that proves that Myalgic Encephalomyelitis is the correct term, and that Opathy is not correct, why do you and the MEA refuse to accept that the WHO were right all along, and stop campaigning for the use of the damaging appellation Opathy which only serves to weaken the case for ME being a physical neurological disease as defined by the WHO?

[action4change4me]

No you are wrong, and the proof of that fact comes from the autopsy evidence from your own research commissioned by you which establishes spinal cord inflammation and damage as well as in the brain of an ME sufferer. Charles Shepherd you simply refuse to acknowledge or face the true facts in this matter fact. you and the MEA are wrong the correct term for ME is Myalgic Encephalomyelitis which is the proper name as used in the WHO ICD Classification fact!

[charlesUK]

We are talking to a number of people at the moment who are making/considering making a sympathetic video/film about ME/CFS. In fact, one is due to go in the can on Friday.

It is always useful to have a good varied list of people who might be willing to appear on radio and TV items, and if this is the case please get in touch with the MEA via our website ME Connect email facility.

Dr Charles Shepherd

Hon Medical Adviser, ME Association

[action4change4me]

The WHO ICD 10 Classification system is binding and mandatory on the UK Government. Myalgic Encephalopathy is not in the WHO International Classification of Diseases ICD 10 nor is it a WHO or an International Nomenclature of Diseases IND approved or sanctioned term so it is not a proper or official medical term or name. It does not have a definition or description of the illness to back what is in reality 2 null and void words which are not a medical name or term for anything.

[action4change4me]

Charles Shepherd has been sent evidence he is wrong about the opathy issue but he has not admitted he led the MEA down a blind alley and until he does the MEA cannot return to the use of the correct term Myalgic Encephalomyelitis. Will he change his mind after he commissioned MEA autopsy research that proves that there is inflammation and damage caused to the brain and spinal cord which is real and does exist and was caused by infection or does he still believe he knows better than the WHO?

[charlesUK]

The ME Association believes that post-mortem research is a vital component to the process of increasing our understanding of the cause of ME/CFS. This issue was raised by the MEA at the first meeting of the new Medical Research Council Expert Group back in December.

In order to assess public opinion on post mortem research we are now carrying out an on-line survey on the MEA website which people with ME/CFS watching this video may wish to contribute to.

Dr Charles Shepherd

[action4change4me]

An MEA Extra Ordinary General Meeting EGM in 2001 the changed the ME in its name to Myalgic Encephalopathy from the Myalgic Encephalomyelitis because Charles Shepherd as Medical Advisor recommended it as he did not believe the WHO classification of ME by WHO was correct as he did not believe there was any evidence of inflammation due to infection in the brain and spinal cords of ME sufferers

[charlesUK]

Ciaran

I've already explained the sub-group registers.

The MEA doesn't offer clinical services.

We inform and support people through literature (see the MEA website) and a telephone helpline (open daily: 0870 444 1836).

We initiate and fund research into causation - in particular arranging post-mortem research and fundraising for a UK tissue bank.

You may not like what we do but most people prefer a practical constructive approach.

Dr Charles Shepherd

Hon Medical Adviser, MEA

[action4change4me]

Charles Shepherd has not disputed the fact that he never gained a cert to practice as a GP from an FHSA or that he did not have a cert from the JCTPGP or that he does not hold a cert from PMETB to practice as a GP. No GP can practice medicine as a GP without holding these certs - fact. He is not a member of the Royal College of GPs. This can be checked via Websites of BMA PMETB RCGP.

Charles Shepherd does not have the certs therefore he cannot practice medicine as a GP - fact.

[action4change4me]

Charles Shepherd has admitted that his work for the MEA does not involve clinical medical services so he thinks he does not need to be able to practice medicine in order to carry out his work but JCTPGP/PMETB/BMA consider such work as borderline and that he is dangerously out of touch with medical practice so he must make his actual status within the medical profession clear. He has chosen not to do so. He has chosen to obfuscate and therefore to mislead people about his status.

[action4change4me]

I believe charity Medical Advisors ought to be doctors who can and do practice clinical medicine because they have the required certs to practice and have up to date clinical skills and knowledge relevant to the medical consulting room.

Ciaran Farrell

[action4change4me]

Charles Shepherd is completely wrong he cannot practice as a GP or hospital doctor according to the GMC of the BMA. Since 1981 all GPs must be certified to practice with cert from old FHSA or from the new JCTPGP which became PMETB. There is no evidence he ever gained is cert from the FHSA and he does not have a cert from JCTPGP or PMETB in order to practice. Therefore he cannot practice and has not been able to practice for many years.

[charlesUK]

Corrections to misleading and inaccurate information that has been posted about my personal and professional life:

I was working as a hospital doctor (Resident Medical Officer) when I developed ME.

My position as Medical Adviser to the ME Association dates back 20 years - the appointment is made by trustees and is unpaid.

I have never been employed by the BMA to speak on ME/CFS.

Doctors can still practise medicine without joining the GP or specialist register.

Dr Charles Shepherd

[action4change4me]

He was sacked by the MEA for gross misconduct and he then successfully campaigned to become a Trustee and got his Trustee mates to make him Medical Advisor a role in which he cannot and does not practice medicine as the is a purely voluntary position without any form of job description and it is not even a post which is accountable to the MEA Board of Trustees. When he worked for the MEA he did not have a contract of employment to provide clinical medical services to the MEA.

[action4change4me]

Charles Shepherd became ill in about 78 after obtaining basic medical quals when he was training to be a GP. There is no evidence he ever gained a cert from FHSA, then the JCTPGP now the PMETB in order to practice as a GP. His GMC reg says he is not in the GP Register nor in the Specialist Register so he cannot practice as a doctor. He is Medical Advisor to the MEA a post with no job description or clinical responsibility which he obtained for himself when he became a Trustee.

[MEAorguk]

I'd just like to post a wee correction to luminescentfeeling's comment. Dr Charles Shepherd is not employed by the BMA in any capacity, but is the unpaid medical adviser to the ME Association, where he serves as a trustee.

Tony Britton, Publicity Manager, ME Association

[luminescentfeeling]

I think I got confused then Tony, I do apologise.

I thought Doctors are employed by the BMA in terms of requiring a license to practice? E.g. as a family GP? Never mind it's all irrelevant - this is a brilliant video.

I want to see more like this in 2009 - Vikki George has motivated me to be more pro active and raises awareness for severe ME.

If Vikki can do it, maybe I can too and anyone else with a long history of severe ME.

[luminescentfeeling]

Good clip. Must be hard to go on national TV like that and answer questions on the spot.

Thank God they took it seriously and didn't mention CBT or other silly things. Also thank God that Esther Ranzten didn't come on. I thought Dr Shephard did a good job too considering he is employed by the BMA and has to watch what he says. (Sadly).

Well done Vickki George for spreading awareness and hopefully you'll get better oneday.

[vikkkilouise]

Thank you :) I have to say I was very impressed with everyone at This Mornings attitude to ME (and to everyone in general), it was a world away from a tv show i had done a previous year.