The Fight is on...Imperial College XMRV Study

[valia]

I think it's disgusting that it's seen as acceptable to blame patients and their representatives for the piss poor way that CFS is being dealt with. But I also do think that it's true that CFS patients seem like angry nutters to a lot of researchers.

CFS patients are having to deal with a lot of strains - often seriously disabled and utterly dismissed. It's not surprising we're rather highly strung and personally invested in CFS research. Rather than tell patients that they need to learn to behave before they'll be treated properly, the MRC and others should be ensuring that more is doen to make sure this difficult condition is dealt with properly, even while patients are so divided and on edge. It seems like everyone accepts that CFS patients are badly treated by the medical system, but it's also thought that they should not respond negatively to that, and it's acceptable to blame them when they do.

I don't know what the best way to move foreward from here is. As ukxmrv said, I think Mark's post is a good introduction, but I also understand why people who've been suing those techniques for some time will be find the endless need for obsequious grovelling to be something of a strain.

This is ludicrous, in what other field of medicine or anything else for that matter could people be treat so badly? Disbelieved, mocked, belittled etc...... and at the same time offered no support or real treatment, then when they respond, be told it is their response that created the situation.

Its like going into a restaurant and being served some inedible pig swill with maggots in it, then when you have dared to complain, you are told had you not complained you might have received a better meal.

 

[V99]

I remember reading about fans of the tv series Jericho, sending peanuts to the tv company, in an attempt to stop the show being cancelled. As we all find it difficult to travel, and with so many of us having difficult with our friends and family, instead of the usual march that many campaigns use, why not do something similar. We could all send the same item to 10 downing street, or the White house Something small, and cheap to post. If we all do this at about the same time, and inform the media, it may make them wake up.

Any thoughts on this suggestion?

 

[thefreeprisoner]

It’s like going into a restaurant and being served some inedible pig swill with maggots in it, then when you have dared to complain, you are told had you not complained you might have received a better meal.

If only this subject weren't so serious, I would have LOLed at this.
What a fantastic description, Valia.
Any chance you can post that in the comments on the Times article? I tried a response but they didn't let it through...

Rachel xx

 

[Countrygirl]

We could all send the same item to 10 downing street, or the White house Something small, and cheap to post. If we all do this at about the same time, and inform the media, it may make them wake up.

Any thoughts on this suggestion?

I wish we could send them 250 000 wheelchairs. That would certainly make them wake up.

 

[thefreeprisoner]

Mark - you are a legend!
Thanks SO much for your awesome campaigning advice.
It is right on the button.
I hope that all of us on this forum some day have the energy to be able to write to their MP/Senator in the form that you recommend.
I have posted such a letter in the advocacy section of this site (which I just sent). I wish I'd known your 3 facts before I sent it - oops!
PLEASE DO move it to the advocacy section. I think we should make it a sticky.
Admins?

 

[froufox]

Absolutely. I said exactly the same to someone, yesterday. I don't have much expectation of this panel, either. The MRC has now been talking for six years about funding "quality" research.

And as for "researchers are too afraid to get involved"...I am sick of seeing this ingeminated by Spencer, Holgate, Peter White, Vivienne Parry (Sense About Science, Administrator for GUS who sunk 360K into the PRIME Project, Patron to ME Solutions who are currently seeking funding for Kerr/Bansal XMRV replication), Charles Shepherd and now it appears the MRC may be using this as a means of control.

It doesn't stop KCL taking funding. It doesn't stop Liverpool and Manchester taking funding.

If the MRC were in a position to ring fence a sizeable funding allocation specifically for ME and CFS - you can bet yer boots that researchers would be there like a shot.

When this panel, another year down the line, are still "sitting round the table", and still no substantial funding approved, they will scapegoat the ME community.

Too demanding.
Too hostile.
Too polarised.
Too many patient orgs...
We can't let you have any money...

Shocking.

And shocking that Holgate has bought right into this. It didn't stop Kerr from accepting 600K for one of the gene studies.

Thanks ME Agenda, and Mark for your hard work. I'm not impressed at all with Holgate's comments either.

According to Ann Keen MP under secretary of state for health who I received a reply from recently via my MP (after I wrote to him few months ago re the XMRV findings) - her excuse was that "The problem is that there appears to be a shortage of good and innovative ideas within the scientific community itself. This is something I know that the CFS/ME community and the MRC are aware of, and the MRC has endeavoured to address this by engaging with patient groups to encourage high quality research proposals. The MRC continues to acknowledge the importance of research into CFS/ME, and it is difficult to see what more th MRC could do without lowering the quality threshold." And with regards to which research proposals are funded "There is certainly no bias."

I wonder whch patient groups she is talking about? Also a lack of ideas??!

I keep meaning to write back to her but I want to make sure I write a good letter and I just havent had the head for it yet.

 

[Dx Revision Watch]

This is ludicrous, in what other field of medicine or anything else for that matter could people be treat so badly? Disbelieved, mocked, belittled etc...... and at the same time offered no support or real treatment, then when they respond, be told it is their response that created the situation.

Spot on, valia, and equally shocking that our UK patient orgs are so quick to collude in this.

Today, the national press covered the Gilderdale case outcome. The Times devoted its entire front page and a double page spread to the case. On TV we had "celebrity" and would-be Member of Parliament, Esther Rantzen (Patron to AYME), plugging the Lightning Process which "cured" her daughter, with apparently (I did not catch the broadcast) not a great deal of insight into just how very ill Lynn Gilderdale had been.

To those who call for "celebs" please be careful what you wish for. We've had problems with two of the Patrons of The Young ME Sufferers Trust - Shirley Conran was a few years back acting as an ambassador for the launch of Peter White's Barts CF Clinic and blythely telling the press that everyone should have a psychologist, and we've had problems with AfME's Patrons.

It may interest some to learn that today it was clarified that the ME Association has just under 5000 members. In October, AfME said that they had 7000, themselves.

The CEO position that Sir Peter took up in 2007 was advertised at 70K pa.

 

[valia]

Spot on, valia, and equally shocking that our UK patient orgs are so quick to collude in this.

Today, the national press covered the Gilderdale case outcome. The Times devoted its entire front page and a double page spread to the case. On TV we had "celebrity" and would-be Member of Parliament, Esther Rantzen (Patron to AYME), plugging the Lightning Process which "cured" her daughter, with apparently (I did not catch the broadcast) not a great deal of insight into just how very ill Lynn Gilderdale had been.

To those who call for "celebs" please be careful what you wish for. We've had problems with two of the Patrons of The Young ME Sufferers Trust - Shirley Conran was a few years back acting as an ambassador for the launch of Peter White's Barts CF Clinic and blythely telling the press that everyone should have a psychologist, and we've had problems with AfME's Patrons.

It may interest some to learn that today it was clarified that the ME Association has just under 5000 members. In October, AfME said that they had 7000, themselves.

Hell yes, be careful what you wish for, I heard Esthar Rantzen talking on the BBC last night, she said her daughter had suffered from M.E for 14 years but luckily had not suffererd from pain.


Well correct me if I am wrong but do any of us not have pain?


Just had a message to say my post was short by 10 characters, I presume this will suffice

 

[V99]

I saw Esther Rantzen, she was on the BBC and ITV. During the BBC chat she said 80% of people recover! Does anyone know where she is getting that figure from, even the CDC acknowledges it is rare, stating 5% to 10%.

On ITV their resident Doctor Hilary Jones said that ME stands for Myalgic encephalopathy, but that there was no evidence of brain inflammation.

 

[Countrygirl]

=V99;39472]I saw Esther Rantzen, she was on the BBC and ITV. During the BBC chat she said 80% of people recover! Does anyone know where she is getting that figure from, even the CDC acknowledges it is rare, stating 5% to 10%.

She is a Lightning Process promoter. They claim to 'cure' about 90% - perhaps she bases her figures on their propaganda.

 

[dipic]

Hell yes, be careful what you wish for, I heard Esthar Rantzen talking on the BBC last night, she said her daughter had suffered from M.E for 14 years but luckily had not suffererd from pain.


Well correct me if I am wrong but do any of us not have pain?

I have not experienced any physical pain in the 3+ years I've had this illness (unless you count "achiness" of muscle which I would consider discomfort rather than pain.) I actually don't think pain is all that common of a symptom with ME/CFS unless you also have Fibromyalgia or another pain related comorbitity. Please correct me if I'm wrong as I'm not sure why you would think that.

On ITV their resident Doctor Hilary Jones said that ME stands for Myalgic encephalopathy, but that there was no evidence of brain inflammation.

It's true that there is no evidence that the majority of people with ME have brain inflammation. ME is a pretty terrible name IMO (though of course nothing compared to CFS.) I'm honestly not sure who or why someone came up with that one.

 

[DysautonomiaXMRV]

I saw Esther Rantzen, she was on the BBC and ITV. During the BBC chat she said 80% of people recover! Does anyone know where she is getting that figure from

National ME Centre - She just happens to be Vice President

(For those not in the UK, there is no 'centre'). It's 8 funded beds by Essex health trust. There is a 'fatigue' team out to cure you though with CBT, GE, Pacing, Group Therapy, Relaxation, Anti Depressants, Keeping an Activity Diary etc.

We should let the WPI know there is a 80% cure for severe ME patients and tell them to call off the biomedical research!!!!

 

[valia]

I have to ask again do any with ME or CFS or anything else you want to call it not have constant pain?



Well correct me if I am wrong but do any of us not have pain?

 

[dipic]

I have to ask again do any with ME or CFS or anything else you want to call it not have constant pain?



Well correct me if I am wrong but do any of us not have pain?

I answered in a previous post (in case you missed it.)

"I have not experienced any physical pain in the 3+ years I've had this illness (unless you count "achiness" of muscle which I would consider discomfort rather than pain.) I actually don't think pain is all that common of a symptom with ME/CFS unless you also have Fibromyalgia or another pain related comorbitity. Please correct me if I'm wrong as I'm not sure why you would think that."

 

[valia]

I answered in a previous post (in case you missed it.)

"I have not experienced any physical pain in the 3+ years I've had this illness (unless you count "achiness" of muscle which I would consider discomfort rather than pain.) I actually don't think pain is all that common of a symptom with ME/CFS unless you also have Fibromyalgia or another pain related comorbitity. Please correct me if I'm wrong as I'm not sure why you would think that."

Thank you Dipic, for your honest reply, I realise now that my post sounded rude, but I honestly thought that we were all in constant pain, I certainly am, since the day I became ill and worse.

 

[flex]

I was warning about Esther Ranson last week. All of a sudden she pops up all over the media just when the goverment and the psychs need a prostitute to use media connections after the Gilderdale case, that never mentioned medical neglect once. Ranson claims that 80% of people recover form ME. Is the common cold now under the ME, sorry "CFS" blanket term.

Her daughter "recovered in 3 days" under the Lightening Process. Amasing, 14 years of "deconditioning" next think she's right as rain.
Now Ranson wants to be an MP. What a media whore!!!

 

[thefreeprisoner]

I have not experienced any physical pain in the 3+ years I've had this illness (unless you count "achiness" of muscle which I would consider discomfort rather than pain.) I actually don't think pain is all that common of a symptom with ME/CFS unless you also have Fibromyalgia or another pain related comorbitity. Please correct me if I'm wrong as I'm not sure why you would think that.

I have had some pain - one night it was so bad that I couldn't sleep. I wouldn't say it was excessive - I just have had more general muscle and joint pain than normal.

IIt's true that there is no evidence that the majority of people with ME have brain inflammation. ME is a pretty terrible name IMO (though of course nothing compared to CFS.) I'm honestly not sure who or why someone came up with that one.

Dr Hilary was showing up his ignorance of the illness, I'm afraid to say, by using the wrong word.

It is myalgic encephalomyelitis which means pain with inflammation of the brain and spinal cord. This term was coined by a UK doctor in a 1959 study after a severe outbreak at the Royal Free Hospital. Medical examination found exactly this feature in the patients studied. This was also found to be the case in Sophia Mirza's autopsy.

I am pretty sure most people with M.E. suffer some kind of pain albeit some more mild than others. However - I'm excited to see the resuilts of _Kim_'s survey - and we shall find out!

I like the term M.E. The fact that it does not characterise the disease by fatigue, and it is more well-known in the UK than CFS, means that - IMHO - it is a good term to use (at least over here). Characterising this disease by fatigue has done us a great deal of damage. This was prophecied by Acheson in his 1959 paper wherein he avoided doing so, saying that if he did it would become a sort of dumping ground for all sorts of other conditions that aren't really M.E.

Hence the mess we are now in with the Psych lobby.

Rachel xx

 

[valia]

posteed in the wrong place, sorry

 

[Katie]

My pain is through headaches, sore throat, glands etc. in waves of days, sometimes hours if I can sleep. I very rarely have skin pain but boy do I know when! My muscles only hurt under particular circumstances, I'm not a fibro sufferer. Weakness is a bigger problem, they don't go to pain, they just disappear like they aren't there or they are empty. I remember how freaked out I was when I had a very severe and sudden relapse, I could not lift my head or hold a glass, I was frightened but the pain was in my skull. Do I suffer from ME? Well I read through the Canadian Consensus a few days ago and I wish someone had read it when I was 12, I could have cried at how much they could have helped me back then, so clear cut. No doubt, I have ME.

Debilitating fatigue is my number one symptom, pain comes in many forms for me, currently it's a four day headache and pain in my right eye. Different folks, different... sufferering. Sucks to be us.


P.S I've said this in another thread but I've met Ms Rantzen, she's not pleasant.

 

[valia]

Spot on, valia, and equally shocking that our UK patient orgs are so quick to collude in this.

Today, the national press covered the Gilderdale case outcome. The Times devoted its entire front page and a double page spread to the case. On TV we had "celebrity" and would-be Member of Parliament, Esther Rantzen (Patron to AYME), plugging the Lightning Process which "cured" her daughter, with apparently (I did not catch the broadcast) not a great deal of insight into just how very ill Lynn Gilderdale had been.

To those who call for "celebs" please be careful what you wish for. We've had problems with two of the Patrons of The Young ME Sufferers Trust - Shirley Conran was a few years back acting as an ambassador for the launch of Peter White's Barts CF Clinic and blythely telling the press that everyone should have a psychologist, and we've had problems with AfME's Patrons.

It may interest some to learn that today it was clarified that the ME Association has just under 5000 members. In October, AfME said that they had 7000, themselves.

The CEO position that Sir Peter took up in 2007 was advertised at 70K pa.

I agree, since I have been actively searching for help with my illness I have found as much as we condem Wessely and co the slimiest of them all is Charles Shepherd (the wolf in sheeps clothing)