An open letter to the lancet, again

[IrisRV]

I admit that I am SO over the whole PACE thing.

It's already heading down the toilet in the US given what the director of the NIH said about these people and their so-called ME research: "They do not have the skillset." PACE is working its way out of our massive medical system, but it will take some time because it's a big system with a lot of inertia. It takes time for the word to get around. Still, it's doomed in the US. It's just a matter of time. I don't think it's a major issue for us anymore. Yes, it's not over, but it hardly needs to be all-consuming for us now.

For the UK... I don't know what to think. PACE and those associated with it are firmly entrenched over there. UK PWME have a bigger fight on their hands.

I'd rather focus on the positive things now -- the beginnings of positive change in the NIH, some serious biomedical research studies both new and ongoing, more and more interest in ME from people previously outside our world (Lipkin, Hornig, Tuller, Coyne, etc)

However, I had to post this PACE-related piece from the Virology blog. It gave me a big goofy grin. I hope it does for you, too.

The list of 42 scientists and clinicians who have now signed the second iteration of this letter is very impressive. Take a look.

http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/

On November 13th, five colleagues and I released an open letter to The Lancet and editor Richard Horton about the PACE trial, which the journal published in 2011.

Although Dr. Horton’s office e-mailed that he would respond to our letter when he returned from “traveling,” it has now been almost three months. Dr. Horton has remained silent on the issue. Today, therefore, we are reposting the open letter and resending it to The Lancet and Dr. Horton, with the names of three dozen more leading scientists and clinicians, most of them well-known experts in the ME/CFS field.

 

[Who Me?]

It seems like PACE is getting a ton of attention now, with everyone going after the 's who push this.

As you say it seems to be much more of an issue in the UK. Only one person ever told me that GET and CBT was good for FM and that was a PA that worked for my PCP (who I left because she was verbally abusive). He got his PA license when dinosaur's roamed the earth.

 

[Beth from Oz]

I cried a little when I read the names on the list. Sonia Marshall-Gradisnik was there from Griffith University Australia, near where I live. I'm so proud.
Yes hope is fabulous and it seems change is afoot. I'm looking forward to what Ron Davis reveals, hopefully later this year.

I hope PACE gets a decent burial. The guy who I saw for Centrelink (social security) benefits insisted I should try CBT, GET, or he wouldn't take my sickness certificate seriously. It's a shame because he's quite a nice guy, just misinformed. So rather than doing that I came off benefits altogether, and now we are just living off my husband's wage. It's been hard but better than jumping through rings that may make my health so much worse than it already is. This was only a year or two ago.

So the wheels are turning and hope is returning and one day when we have a name for this disease that makes sense, we have a biomarker and treatments; they'll make movies about this awful period of time the way they make movies about homophobia and Aids(like The Dallas Buyers Club). And people will say "wasn't it terrible the way the ill were treated in those days?"

 

[Cort]

It seems like PACE is getting a ton of attention now, with everyone going after the 's who push this.

As you say it seems to be much more of an issue in the UK. Only one person ever told me that GET and CBT was good for FM and that was a PA that worked for my PCP (who I left because she was verbally abusive). He got his PA license when dinosaur's roamed the earth.

We just don't get CBT over here in the states. Has anyone over here been recommended a course? Let alone required to take one to get disability...

 

[Seanko]

@Cort In the 16 years since I been diagnosed with ME/CFS no doctor has ever suggested CBT or GET where I live in Southern England. I have basically been left to get on with life which is the case for most people in the UK. I have seen a counsellor & been on a pacing course.

You do not have to attend CBT or GET to obtain welfare benefits. There are plenty of other problems in getting the appropriate welfare payments which is a nightmare for most people with ME/CFS . Sorry to hear about your experiences in Australia @Beth from Oz

The town where I live has a population of 200, 000. The nearest place where you could receive CBT/GET is 30 miles away. Nationally what you get is totally random and depends on the medical staff & their attitudes at a particular hospital or clinic.

Other people will of course have different experiences especially if they have been to hospitals associated with the institutions behind the PACE trial. in London.

 

[Seanko]

PS I do welcome the letter, some big important names on the list. Nearly all the UK ME/CFS charities have now called for the PACE data to be released too.

The glaring omission is of course medical professionals working within the National Health Service or government funded research programmes in Britain. Jonathan Edwards & Nigel Speight are retired so they have more freedom to speak out publicly.

Prof Julia Newton is the medical adviser for Action for ME, so she will have had input into that charity's statement this week . She is the Dean of a major medical school and an important regional specialist. She probably will not publicly condemn PACE for professional & political reasons for now.

However watch this space for further news. Winter is coming for PACE

 

[Merida]

I hesitate to even mention this, but my daughter ( at a large university on the West Coast) just got a $750,000 NIH grant to study CBT and a certain kind of pain that is common in Fibro/ CFS/ME patients. I can't even talk to her on this subject. So, this kind of thinking isn't 'dead' here in the U.S. Geez. Seanko, interesting how NHS docs are not speaking publicly on this matter.

 

[Empty]

We just don't get CBT over here in the states. Has anyone over here been recommended a course? Let alone required to take one to get disability...

It is a massive problem here in the UK. Has created unecessary suffering for those with ME CFS. I think unchecked it will spread to a town near you... lol

 

[Empty]

PS I do welcome the letter, some big important names on the list. Nearly all the UK ME/CFS charities have now called for the PACE data to be released too.

The glaring omission is of course medical professionals working within the National Health Service or government funded research programmes in Britain. Jonathan Edwards & Nigel Speight are retired so they have more freedom to speak out publicly.

NHS medical professionals. My god well spotted! I am so used to them being useless, good for nothing dead weights, I didn't even notice their lack of presence here.

 

[Seanko]

I think unchecked it will spread to a town near you... lol

Bath is the place I was referring to...the home of the Esther Crawley clinic. I am too old for that

NHS medical professionals. My god well spotted! I am so used to them being useless, good for nothing dead weights, I didn't even notice their lack of presence here.

There's a few good ones out there eg Dr Bansal at Epsom & St Helier Hospitals I mentioned in connection with the Rituximab trial. He tells his patients what is happening research wise and is involved with IiME & MEA. We need to clone people like him

 

[Empty]

I adore Bath. It has a wonderful peace about it. Lived there for a short time.

 

[IrisRV]

I hesitate to even mention this, but my daughter ( at a large university on the West Coast) just got a $750,000 NIH grant to study CBT and a certain kind of pain that is common in Fibro/ CFS/ME patients. I can't even talk to her on this subject. So, this kind of thinking isn't 'dead' here in the U.S. Geez. Seanko, interesting how NHS docs are not speaking publicly on this matter.

Is there any hope she's studying how to help people cope with pain? That feels more or less okay to me. It doesn't deny the patient's reality.

If she's studying how to convince patients that the pain they feel is imaginary, that psychotherapy is the only thing that can relieve their pain, well, you have my sympathy.

 

[San Diego]

Today, therefore, we are reposting the open letter and resending it to The Lancet and Dr. Horton, with the names of three dozen more leading scientists and clinicians, most of them well-known experts in the ME/CFS field.

Don’t answer us? We’ll just get 3 dozen more experts to sign and resend. Seems it’s getting harder to ignore. This makes me so happy.

We just don't get CBT over here in the states. Has anyone over here been recommended a course? Let alone required to take one to get disability...

We just call it “exercise" here.

 

[IrisRV]

Don’t answer us? We’ll just get 3 dozen more experts to sign and resend. Seems it’s getting harder to ignore. This makes me so happy.

In yo face, Jack! (Sorry, that's the closest emoji I could find to the sentiment)

We just call it “exercise" here.

As in, "I'm sure you'll feel better if you just get some exercise"?

Maybe it's not so much that we are pushed to take courses of brain-washing therapy and programmed increase exercise programs, as that we get stupid advice to look up some counseling for our supposed depression and get a little exercise.