Dr Esther Crawley discusses XMRV and WPI, March 2010

[Sunshine]

Weasel strikes again?

If Professor Simon Wessely is in the business of 'rehabilitation' why has he been placed as advisor to the UK media over CFS/ME, a non psychiatric illness he acusses and encourages to be a psychiatric illness. Wessely, quote: 'ME is a belief'', the belief one has ME. unquote.

If Professor Simon Wessely is in the business of 'rehabilitation' why does he help advise the Medical Research Council (MRC) on which studies to fund for CFS/ME?

If Professor Simon Wessely is in the business of 'rehabilitation' why did he help get Ean Proctor (a child) sectioned under the mental health act who was paralysed with ME?

If Professor Simon Wessely is in the business of 'rehabilitation' why did he undertake involvement in a failed XMRV test with Myra Mclure? Rehabilitation does not involve getting involved with infectious immunology of a potential fatal chronic neuro immune disease.

If Professor Simon Wessely is in the business of 'rehabilitation' why did he say that he was in agreement that doctors would find patients with ME, ''disgusting''?

If Professor Simon Wessely is in the business of 'rehabilitation' why did his college (where he is the head researcher) receive two dead ME patients brains?

If Professor Simon Wessely is in the business of 'rehabilitation' why does he get paid by the British Army to state there is no one cause of ME, or Gulf War Syndrome and research in GWS should end?

If Professor Simon Wessely is in the business of 'rehabiliation' why does he say that the fear of germ warfare agents is more dangerous that germ warfare agents lethal abilty to kill?

If Professor Simon Wessely is in the business of 'rehabiliation' why did he congratulate Elaine Showalter (Princetown Scholar in English) in her book 'Hystories' that likens CFS to alien abduction and calls CFS 'infectious hysterical disease'?

Consideration:

What has calling ME patients digusting, saying ME doesn't exist, helping to stop research funding into ME, and producing poor quality XMRV research have to do with 'rehabilitation'?

It appears, Professor Simon Wessely may have multiple identities and personalities that suit him for the moment he needs. All which are outside of his remit of someone who is in the business of 'rehabilitation'

 

[pictureofhealth]

If SW is in the business of Rehabilitation of CFS patients - then why haven't the vast majority of his CFS patients been successfully rehabilitated and gone back to work for eg. He isn't very good at his professed job, is he?

 

[urbantravels]

Seriously.

 

[blacksnake]

Clarifying the UK ME charities for down-unders

Eric,
It's all about power, money and careers here.

We have 2 "ME Charities" which are solidly behind psychological causes and therapies - although they lie through their teeth to patients.

Sorry this is off topic but ukxmrv I'm sure you can help me. There are several UK support groups. I know some are more helpful to patients than others. Very confusing when I look at web pages and blogs. Can you please enlighten me? (I guess there are probably shades of grey. But, hey a "White Hat", "Black Hat" classification will be enough to remove my confusion )

 

[ukxmrv]

Blacksnake, there are differing opinions on this.

The ones personally that I have had problems with are

1. AfME
2. AYME

 

[Sherby]

Sorry this is off topic but ukxmrv I'm sure you can help me. There are several UK support groups. I know some are more helpful to patients than others. Very confusing when I look at web pages and blogs. Can you please enlighten me? (I guess there are probably shades of grey. But, hey a "White Hat", "Black Hat" classification will be enough to remove my confusion )

ME Association, AFME & AYME are all Simon Wessely disciples of disinformation and lies.
Some were once proper support groups which over the years have been corrupted, and now spread the wessely words.

I'm sure there are other forum members here that can give more detail. I'm rather permanently to Foggy to go into full length discussions

 

[floydguy]

ME Association, AFME & AYME are all Simon Wessely disciples of disinformation and lies.
Some were once proper support groups which over the years have been corrupted, and now spread the wessely words.

I'm sure there are other forum members here that can give more detail. I'm rather permanently to Foggy to go into full length discussions

Hopefully, at some point soon we can start feeding information to the human rights organizations on folks like Simon Wessely and he can be brought to trial for crimes against humanity. I hope groups in the UK are documenting the pain and suffering that people have been put through due to his reign of terror.

 

[Dx Revision Watch]

I have made some minor revisions to the transcript, this morning. Post #1 has been edited, today, and contains this revised version.

I am now "locking" the transcript at 20 August.

The formatted version in Post #1 and on my website ( http://wp.me/p5foE-31g ) supersedes all previous versions (including the plain text Co-Cure version).

The revised version has been forwarded, today, to Dr Judy Mikovits and to Susan Douglas (DoubleD Productions) - so no duplicates, please, to these two.

If you have posted elsewhere, please alert readers to the revised version on my site.

@ jimm

Thanks very much, jimm, for editing your own post and for alerting me to the errors.

Suzy

 

[ukxmrv]

Floydguy,

We have been sending information to "human rights organisations" for many years in the UK. We only receive standard or very basic letters or replies.

 

[pictureofhealth]

I'm looking forward to sending Dr Crawley a copy of the Alter/Lo FDA/NIH study from PNAS when published.

I'll also send a copy of the results from the first 50 patients the WPI tested in the UK recently - again once available.

NICE will also get some copies.

Sherby - I was a bit surprised to see the MEA included on the list of 'no hopers UK ME groups' above.
I wouldn't give the time of day to AfME, but I thought MEA were ok - they've helped to fund Dr Gow's gene research and are in close contact with Dr Kerr and ME Research UK - all of whom are definitely v serious about ME research.

Its true that Dr Shepherd comes across as a bit conservative and hasn't immediately leapt on the XMRV bandwagon until the full facts are known - but he has published lots of info about it on the website and covered it in the MEA magazine and has offered funding in the UK for further XMRV studies. He even posted an article speculating about the publication of the positive FDA study - which must a big step for him as a qualified doctor to publish a speculative newspaper article rather than wait for the full publication. I'd say he definitely wants the truth out and known.

 

[eric_s]

ME Association, AFME & AYME are all Simon Wessely disciples of disinformation and lies.
Some were once proper support groups which over the years have been corrupted, and now spread the wessely words.

I'm sure there are other forum members here that can give more detail. I'm rather permanently to Foggy to go into full length discussions

What i'd like to know, are those private organizations?
Who is funding them, who are the members and who's leading them? People with ME/CFS?

 

[Sunshine]

I'd say he definitely wants the truth out and known.

With respect, for people who know and study the history of Dr Shepherd over 15+ years, that is not an accurate statement. Yes the ME association are the best of a bad bunch, but they aren't even barely good enough by allowing themselves to replicate psych lobby spin that helps 'some people'. He may well be a good person, and trying to help people as he is paid to do, but one cannot be seduced by the psych lobby's theories on CFS/ME whilst claiming to be on our side also. The two are incompatible.

CBT and Exercise cannot possibly help 'some people' due to the pathogenesis of what ME is. He won't accept this, and mirrors the psych view of pick and mix illness. ME is a unique disease, one disease. The hallucinatory concept of CFS/ME, is a UK government health agency pick and mix syndrome that people with ME don't have. CFS is an umbrella term and ME is a neurological disease and the ME Association is called the ME Association, not the CFS Association or CFS/ME Association.

The ME Association over a decade ago were a good organisation, they tried and stuck to their guns. Sadly, like AFME & AYME have been infiltrated by the psych lobby and their charity is partly funded by the Department of Health. To do this, they must pledge to take a pro psychiatric view on CFS/ME, particularly with the use of CBT. This is a fact, (funding for ME Association towing the CBT line) and Dr Shepherd has said and done very little towards people with neurological ME by speaking out in recent years.

Dr Shepherd stated on the ME Association guide to XMRV (in multiple drafts) that being infected with XMRV doesn't mean the illness isn't in your mind. He did this by saying XMRV doesn't end the psychological vs physical debate, which was a laughable comment. He then tried to defend this by saying people with Schizophrenia may have retroviruses too. A very strange thing to say and straight of the psych's line of defence.
Did Peterson, Klimas, Cheney or anyone else say XMRV doesn't end the psychological debate? Of course not. They are doctors also. He also said in a question via email that he is not interested in getting an XMRV test done himself, (despite claiming he has ME), because he helps 'run an ME charity'. What does that say? It allows someone to speak on others behalf, who doesn't have their illness. That is wrong. He should be fascinated and overjoyed about XMRV and finding out why he is ill, but not he has no interested. This is somewhat, convenient and allows him to doubt XMRV.

If you want to believe Dr Shephard is wanting to get the truth out, this is for you to believe and please do. You may be dissapointed however at his historical record of getting truth out if you study him keenly and see the masses of lost opportunities that have been and gone for ME advocacy. To ignore XMRV now as XMRV 'doesn't explain all cases, is a betrayal. XMRV doesn't explain all cases of CFS. ME is not CFS, especially in the UK. He know this, yet by taking this line the truth does not get out.

People who are are advocates don't sit on the fence and take an over cautious perhaps approach. This means advocacy is diluted and ineffectice. Advocates are outspoken and opinionated for a reason. He is not any of those things by a long shot. He is timid in challenging the psych lobby's attack on ME patients and now XMRV. He would feel himself a lion though in comparison with his useless ME colleague's who say absolutely nothing and do nothing.

He does speak but not on what needs to be heard, and tries to please all parties at once as his MD degree taught him. To be effective you have to be a real lion, not a paper tiger or in his case a paper domestic cat who occasionally scratches. We need real, raw tumultuous sustained medical 'corrections' on the psych lobby on ME and XMRV and we simply don't get it from the ME Association. Even they are now doing polls and gathering data which shows blatantly the people they represent (ME patients), are not ME patients. Hence his hostility towards XMRV.

If XMRV causes all cases of neuro immune ME, which it increasingly looks like, then these charities will lose masses of their patients base overnight who have psych CFS. So they must please people with psych CFS. Hence the polls on CBT and other LP nonsense we all know are scams for people with genuine ME.

The ME Association are on mute, whilst the ME patients are screaming flat out. A mismatch of representing patients, and keeping the truth supressed then. Some may feel accidently on purpose. I look at Dr Shepherd's ME book on my book case and ask myself. What happened? There was a lot of potential there, and it got lost over time and ended up as a haze of perhaps anything can help ME, which is a mirror of the psych lobby and thus? Useless for a non psychiatric neuro immune inflammatory catastrophic disease that needs the likes of the WPI.

 

[pictureofhealth]

I think, but I could be mistaken, that unfortunately AfME (Action for ME) and AYME (Association for Young People with ME) in the UK have accepted government money for their organisations in return for backing the establishment of national clinics promoting CBT & GET (behavioural 'rehab' programmes) for ME patients. The man running AfME at that time is no longer in charge.

This is not the case with the MEA as far as I know.

AfME (& AYME I think) also recently promoted a 'scientific' conference they held jointly with the MRC a year or so ago as being the 'first ever (inter)national ME biomedical conference' or words to that effect, when Invest in ME have in fact held many over recent years with invited international ME scientists and doctors (the most recent this year included Dr Mikovits). Although AfME and the MRC have been invited to attend these Invest in ME biomedical conferences, I don't think they ever have and certainly they have not acknowledged the InvestinME conferences in their publicity materials.

AfME and AYME also seem to have unprecedented access to national media and newspapers promoting themselves as the main UK ME charities - although many thousands of ME patients say that these charities DO NOT speak for them. UK patients want biomedical research and national clinics with neurologist and immunologists practising biomedical medicine - not psychotherapy.

They also tend only to publish newspaper articles UNrelated to biomedical research.

The ME Association is completely different as far as I can tell (unless there is some kind of covert 'good cop, bad cop' routine going on here that I've missed).
They regularly discuss and publish, pay for and promote biomedical research and are currently in the process of raising funds and investigating the feasiblity of a Brain and Tissue Bank for post mortem ME research.

They have recently published a strongly worded letter saying that they strongly disapprove of Dr Crawley's proposed LP study on children and that they are very concerned about the fact that she has been set up or has set herself up as part of an organisation called BACME that claims to be THE UK ME national government approved organisation for patients, research trials etc.
Many patients and other ME organisations in the UK strongly object to BACME saying that they have not been consulted and nor do they approve of the psychological bias it promotes.

The sad truth is that still at the moment there appears to be a strong government backed psychology/psychiatry lobby for ME 'management' in the UK - who knows for what reason - money, insurance companies, or worse.

I'd say that Dr Shepherd, whatever he may have done in the past which has upset people, is very much against this CBT/GET lobby and has done his best to bring these injustices to the attention of a group of MP's especially set up to examine what can be done to fund biomedical research into ME in the UK and to establish proper biomedical health facilities and funding for ME in the UK to bring the care and treatment of ME patients here into line with the care, treatment and funding afforded to other serious diseases.

I think his advantage, but also his drawback from our point of view, is that he is at heart a traditional UK trained medical doctor who thinks like one and who wants therefore to work from within the system to change it - but play by the rules. Many of the 'newer' charities that are not doctor led do not necessarily think in the traditional medical mindset, nor do they have to play by the rules in the same way and don't know what these unwritten medical behaviour 'rules' are anyway as they are not doctors - like Invest in ME (I think but I'm not sure) - but they may be able or more likely to effect change from the outside.

The WPI on the other hand is able to affect change by working outside the traditional mode of medical behaviour - ie making brave statements & assertions prior to publication which most doctors wouldn't do. They are not federally run (not yet anyway). (Dr Shepherd is more traditional I'm guessing! - He wants to see the facts first!) Even if the WPI are totally right (which it seems they are and I certainly hope so) it does upset traditionally minded doctors and scientists.

Also I heard, but I'm not entirely sure, that Dr S's interest in ME and running the MEA is that he had encephalitis and was very ill (no idea if this is true or not). I don't know if this could be considered traditional 'ME' - it might explain some of his statements though about naming his ME charity after Myalgic 'Encephalopathy' as opposed to M. 'Encephalitis' - 'encephalopathy' implies the damage done by a previously existing, but no longer active, inflammatory process in the brain. Personally having had ME (I also had Meningitis in my 20's so I do know what i'm talking about!), I'm pretty sure this is an ongoing inflammatory condition of the brain (not a post viral encephalopathy, but ongoing viral) - so I disagree with him there and prefer Encephalitis.

That's my take and I may be entirely and completely wrong. I've been ill for almost 14 years and mostly housebound, so I want to support the charities which are MOST likely to make big change - not just in the US but in the UK. I think the US and the WPI are definitely leading the way and the rest of the traditional, 'rule bound' UK will eventually follow suit.

 

[Sherby]

Sherby - I was a bit surprised to see the MEA included on the list of 'no hopers UK ME groups' above.
I wouldn't give the time of day to AfME, but I thought MEA were ok - they've helped to fund Dr Gow's gene research and are in close contact with Dr Kerr and ME Research UK - all of whom are definitely v serious about ME research.

Its true that Dr Shepherd comes across as a bit conservative and hasn't immediately leapt on the XMRV bandwagon until the full facts are known - but he has published lots of info about it on the website and covered it in the MEA magazine and has offered funding in the UK for further XMRV studies. He even posted an article speculating about the publication of the positive FDA study - which must a big step for him as a qualified doctor to publish a speculative newspaper article rather than wait for the full publication. I'd say he definitely wants the truth out and known.[/QUOTE]

pictureofhealth

I don't like the direct connection between the ME Association and the NHS CFS Services.
Two clicks with the mouse connects you with one of the National Me Centre's and for some
all your offered is CBT GET Life style management ,oh also you get to see a Psychologist.
I know because i have been through there system to many times.
Maybe i am being to hard on The ME association. Problem is they do some good,
but also harm at the same time. That's just my view.

 

[pictureofhealth]

Yes that does not sound v reassuring. Is there no one we can trust in the UK?! Surely the FDA paper will make a huge difference? At the v least it should galvanise worldwide research in other countries. Medical conservatism is great when it comes to surgery, but not when it stops scientific enquiry full stop.

 

[V99]

AfME and AYME are a disgusting propaganda tool. The MEA is ok, but has no guts to say it like it is. Now you could say, ok that's a different style of charity, but frankly people have been dying and it's just not good enough. Invest in ME are the charity to trust. So far I have not seen them compromise.

 

[ukxmrv]

ME Research UK (used to be MERGE)
The 25% group

 

[V99]

Yep they are good too.

 

[blacksnake]

Thanks.......

 

[Joanne60]

With respect, for people who know and study the history of Dr Shepherd over 15+ years, that is not an accurate statement.

I agree wholeheartedly with your statement.

Coming from an ME/CFS diagnosis which turned out to be lyme disease treated on long term antibioitcs and recovered, I e mailed Dr Shepherd. His response was that he watched developments with Lyme Disease with interest. Clearly he watches it selectively just like our HPA and the IDSA selective amnesia when it comes to the IDSA Authors of the 2006 guidlines who claimed chronic lyme and persistent infection despite antibiotics when it suited them to apply for patents for vaccines, but not when it comes to treating patients many of which because of the likes of Shepherd are never even considered for lyme Disease despite a significant number of patients diagnosed with ME/CFS being diagnosed with lyme Disease in research.

Now Burrascano seems to be suggesting that many with chronic lyme have also got HGRV I know some who have already tested positive for lyme and XMRV.

http://lookingatlyme.blogspot.com/