ME/CFS Documentary

[RJJ]

Hi All,

I'm currently researching a ME/CFS for a documentary which myself and colleagues are currently pitching to UK broadcasters such as Channel 4. We are very serious with my colleagues being experienced producer/journalists working on the current affair series such as 'Tonight', Panorama etc. I'm looking to pull together as much information as I can about why ME/CFS has for so long been classified: Psychological. I have also heard that there are ME/CFS files which have been placed under the national secrets act making the unavailable to the public for 73 years; does anyone know more about this?

I am looking for someone involved with ME/CFS who is a doctor, scientist, researcher etc who would be willing to voice their opinion on ME/CFS. We are also looking for someone from the medical profession who would be willing to perform some ground breaking research -- claims which are being reported to having a 100% success rate for cure ME/CFS.

It would be great to hear from anyone who feels that can contribute the this film -- including stories about how you/loved ones have been treated.

Please email me: rj@richardjeffs.tv and I would be grateful for a chat.

Richard Jeffs.

 

[Katie]

Just for clarification, the 100% success rate 'cure', are you talking about the Lightning Process? I understand if you do not feel that you can say to protect your idea or to shield yourself from Phil Parker's attention as he has been threatening people speaking out against his 'treatment' with libel action. This was reported in Private Eye 1248.

One suggestion I would make is to book a trip to Reno and the Whittemore Peterson Institute, no ME/CFS documentary will be complete without it and by the time you get round to that there could well be a wealth of supporting evidence. Or not so you get to save yourself a trip

Also, you might want to try and interview some of the leading psychological players such as Simon Wessely et al. Others will give you more names. In researching them, follow the money (pharmacuticals, insurance etc) and follow the power and influence (government advisors, adocate groups, AfME)

Good luck with your documentary, you could well be filming it at the most important and pivotal time of the disease's history.

 

[susan]

NZ doc

Here is a documentary made by New Zealanders recently...not bad for a little country. You might get something from it. http://www.nzonscreen.com/title/open-door-me-2008

 

[zero]

"Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic", by Hillary Johnson, would be a perfect place to start your research. Her website (http://oslersweb.com/) has some other great additional (not to mention current) info.

 

[Dx Revision Watch]

MRC archived material at Kew

It is my understanding that a redacted version of some MRC archived material which included papers, correspondence and enquiries with MRC replies was made available for public viewing in November 2007.

Additionally if you go to these three URLs, below, scroll each page for content and then open all the links under "Context" on each of the three parent pages, and their child pages, there is information about the nature of the material that is archived:

http://www.nationalarchives.gov.uk/...69707&CATLN=6&Highlight=&FullDetails=True&j=1

http://www.nationalarchives.gov.uk/...98595&CATLN=6&Highlight=&FullDetails=True&j=1

http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

If you would prefer the URLs sent directly to you, let me know and I will forward them (they won't display in full in this message and they are long and may break up).

Edit: I have sent the URLs to you directly with some additional comment.

Suzy Chapman

 

[Marylib]

Not bad for a little country?

Susan! What a thing to say!

Actually the doco is very good, and Dr Ros Vallings gives an excellent account of how ME/CFS unfortunately fell into the hands of psychiatry...(we are very very proud of our Dr Vallings if I do say so myself)

Sincerely yours from that little country whose virtues I cannot begin to enumerate,

Marylib

PS. Hopefully no one will pay any attention to anyone who says they can cure ME/CFS at the current time. A waste of good time and energy. Hopefully that day will come, but until it does, only charlatans or the misguided will make that claim.

 

[_Kim_]

Thanks for posting the link to that video Susan. Although I hear many different accents all of the time (I'm not far from NYC), I rarely get to hear the New Zealander's spoken English. Now everytime I read one of Marylib's posts, it is going to be "heard" in my head in an accent similar to what I heard in that video.

 

[Min]

Prof Malcolm Hooper would be a spiffing chap to interview

http://en.wikipedia.org/wiki/Malcolm_Hooper

 

[Marylib]

For Kim

Thanks for posting the link to that video Susan. Although I hear many different accents all of the time (I'm not far from NYC), I rarely get to hear the New Zealander's spoken English. Now everytime I read one of Marylib's posts, it is going to be "heard" in my head in an accent similar to what I heard in that video.

Oh dear, Kim....I am sad to say that I am not a native New Zealander -- only by marriage...My accent is a cross between Memphis Tennessee and San Francisco!

 

[Dx Revision Watch]

http://bacteriality.com/2007/11/10/interview10/

Interview with Paul Albert CFS, depression, food sensitivities

From article comment section:

Richard Jeffs
December 22nd, 2008 at 7:20 pm 63

Hi, i have had CFS for four years. in Feb 08 I learnt about a new treatment CFS and the organization claim that CFS illness has a relationship to and overgrowth of Candida. I was tested and too showed to have a huge overgrowth. I stuck to a strict given diet and rid myself of the Candida. Eight months on I am starting to feel the effects of recovery. Im confident Im recovering, but with having to work recovery is slow. I have a few questions Have you heard of Candida? I am searching for other techniques that have proved helpful for recovery and have stumbled across your site. Partly due to tiredness, Im not clear on what it is youre describing would help cure my CFS? What is MP and how does it help? what is L-Forms and Bio films and how will it help me?

 

[susan]

Marylib,
But I am a New Zealand descendant, my mother born in Petone outside Wellington. I think NZ does amazing stuff, weren't they the the first country to give women the vote?

I spent a wonderful year hitch hiking and working in glorious tourist NZ hotels in the 60s where I first met Bacardi rum...had not hit Australia by then. What a ball I had.

 

[garcia]

I just had a look at the NZ documentary, and although it was interesting, I don't think it really gave an insight into this disease. All the people interviewed were dressed-up and outside or doing normal things. So at the end of the documentary you come away with the impression "Just a bunch of normal looking people who are a bit tired. Big deal".

This is an invisible illness. You need to show it at its worst, otherwise don't show it. Showing a bunch of well dressed, articulate people oustide doing stuff is only going to be of limited benefit at best, and may even be counterproductive.

Also there was little insight into the biological basis of ME.

Personally I would avoid all talk of anything "kooky" whether it is "skin therapy" or psycho-stuff like gupta/lighting process. If there is one guaranteed way to make an illness less credible it is to talk "kooky" therapies.

Plus there were too many women in this documentary (again reinforcing the idea that its a "woman's disease"). I'd liked to have seen a 50/50 balance, even if the disease isn't 50/50.

So in summary here are my recommendations:
-avoid making it a woman's disease (ideally 50/50 gender balance)
-avoid showing people looking their best. Show them at their worst (see "Under our Skin" for good examples of how to do this).
-Avoid all talk of "kooky" therapies otherwise you just undermine the credibility of the disease
-You need serious hardcore scientific representation to talk about e.g. the biological basis of this disease

 

[_Kim_]

Bwaaaah!

Oh dear, Kim....I am sad to say that I am not a native New Zealander -- only by marriage...My accent is a cross between Memphis Tennessee and San Francisco!

Oh dear Marylib, it's so funny what assumptions I (we) make. I am from NJ and as "accent assumptions" go, people expect me to speak like one of the Sopranos.

 

[Alice Band]

Agree with Garcia about the New Zealand video.

It's the type of thing well meaning people make when they have not thought through the implications of how to present the disease and what people will think.

All the participants looked far too well and were at a high end of physical functioning (for PWME).

It should have showed people who were in bed and at the lowest end of the spectrum. Then "one more active" person to show the range of the disease.

It looked very much like a documentary on depression or burnout and I think that anyone who didn't know about ME would assume that it was similar and on par. It isn't enough to say that it is different, it must be shown.

The symptoms were very badly described and the subjects badly chosen. Where were the viral symptoms? I could not recognise the disease ME.

Why on earth did they show someone hanging up her washing so well? why did they show someone on a beach? Many people with ME would love to be so active and it was unfair and insulting to sufferers to portray the disease like that.

The beach scene in particular was bad. Many people would love to spend their days walking the beach - well and sick people (I would). It made the sufferer look lonely though and once again hinted at psychological disease.

There was also an inaccurate emphasis on stress and high achieving adults making the disease look and sound like "burn out". I don't think that ME is a disease of people who work too hard and the original ME doctors certainly didn't think so.

A few years ago I had a dialog with a person in NZ from the original Tapanui Flu outbreak involved with ANZMES, they described how the old ME patients were being drummed out of the groups, and replaced with people who were new CFS'ers and a particular kind - the burned out and TATT.

I don't think that the film-makers set out to make something this bad. It was just naive and badly thought through.

People in NZ with CFS and ME should be asking for the film to be withdrawn and say that they would like their money back!

 

[liverock]

If you want to interview a CFS doctor in the UK then Dr Sarah Myhill would probably be a good choice.

She has been working with CFS patients for over 20 years and has treated over 4,000 cases. She is also is a consultant for ActionME, an organisation advocating for more research and treatment for CFS patients and has represented the organisation at Parliamentary Commitees looking at CFS.

http://www.drmyhill.co.uk/cfs_book.pdf

 

[froufox]

Hi Richard, good for you for making the documentary. I agree that the one from New Zealand was too tame and could have gone a lot further. I hope that you are able to represent severe cases and not just moderate ones in your doc.

I also agree with Min that Malcolm Hooper would definitely be someone worth contacting and was one of the first people to come to my mind when I read your post. You might want to read this article co-written by Hooper that gives a lot of insight into the politics surrounding ME in this country..

http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

Thanks for making the effort and good luck!

 

[condra]

Good luck with the documentary. Keep us posted on your progress please!

 

[Marylib]

NZ Doco -- get your money back? What money?

Well, I know what you mean by "too tame." But it was a private enterprise by a tv doco production company, so....there you have it.

Someone said "Get your money back?" I don't know whose money you are referring to. I guess the money spent was that of the production company. It was made to be shown on a Sunday morning show about people with disabilities. It is their film.

So they did their thing and I still think there was some valuable information presented to all 7 people who skipped church to get up and watch it Just kidding -- I was really happy the film got made. But that is my own personal opinion. Everyone will his or her own personal opinion, according to their own perspective, and I certainly understand that.

 

[Marylib]

For Susan and Kim

Marylib,
But I am a New Zealand descendant, my mother born in Petone outside Wellington. I think NZ does amazing stuff, weren't they the the first country to give women the vote?

I spent a wonderful year hitch hiking and working in glorious tourist NZ hotels in the 60s where I first met Bacardi rum...had not hit Australia by then. What a ball I had.

Hmmm, you may not have been the only person to find Bacardi in a hotel in the sixties. It is great that you have that time of being healthy to have fun, eh?

Kim, yes, I am sure everyone expects you to talk like a Soprano! It is funny, when I first went north when I was about 18 (from the south) I had one person say to me: "I am surprised you are intelligent. When I hear a southern accent, I expect the person talking to be stupid" Yes she did say that,... then I decked her....just kidding! Probably these days, anyone who has a Joisey accent is expected to be in the mob;

 

[Dx Revision Watch]

Candida?

I am told that Richard Jeffs has been telling enquirers that it is a "fungus" that he believes "cures CFS".

So given this information and given the content of the comment he had left a year or so ago, on a web article (posted above), then I would imagine that what we are looking at here is a pitch for a programme around candida.