UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

A number of us are struggling with the #MEAction form letter so I’ve drafted a short, simple one here that anyone can just cut and paste into an email. You can personalise it if you want but all you really need to do is put your MP’s name at the start and yours at the end.

You can find your own MP’s contact details here.

Subject line: Westminster Hall debate, Tues 20 Feb, 11-11.30am – PACE trial and its effect on people with ME

Dear ****,

I’m one of your constituents and suffer from ME (myalgic encephalomyelitis). I’m writing to ask if you would please attend this debate, which is very important to me.

It concerns the £5 million, taxpayer-funded PACE trial of exercise and talking therapy for patients with chronic fatigue syndrome (which the NHS considers synonymous with ME). The trial’s claims that these therapies are effective have now been widely discredited due to the trial’s poor methodology and surveys indicate that exercise in particular can be very harmful for patients with this disease.

The researchers’ insurance-industry conflicts of interest were not disclosed to patients in the PACE trial before the study began. The study’s original analyses to gauge improvement and recovery were abandoned and replaced partway through the trial; £250,000 was spent in vain on legal fees to stop the underlying data being released for independent scrutiny. Over 100 leading scientists and patients’ organisations worldwide have called for the researchers to retract their inappropriate claims that patients recovered due to the trial therapies, but the researchers have not complied.

The trial is now being used in several universities as a teaching example of poor science and has attracted critical coverage from international media, such as the New York Times. And yet I and 250,000 patients in the UK and more worldwide are affected every day by the influence of the claims made in the PACE trial.

I would be deeply grateful if you would attend the debate on Tuesday.

Yours sincerely,


*********​

 

Tagging @MeSci.

If anyone saw anyone else struggling, please tag them here (I tagged @Nellie in another thread).

 

Great work Sasha.

It could also be good for some people to add in a link to something like the NYT article, as a way of showing 'respectable' sources are concerned and that this isn't just some crank thing.

eg: "The trial is now being used in several universities as a teaching example of poor science and has attracted critical coverage from international media, like the New York Times."

 

Good idea - but that link doesn't work for me. Can you help? I'll add a good link to my OP if you can provide one.

Edit: Now done with correct link.

 

a nicely balanced letter. I' m afraid mine was not as eloquent!

 

This is great. Unfortunately I've already sent my own poor attempt.

 

The main thing is that you got it done!

We just need to do this in big numbers. Every UK PWME who can copy and paste some text into an email can help by doing this simple, one-minute job.

 

Totally agree, we need to mobilize an army of patients, just a few will make little impact, but if thousands of us did it we might just bring about some positive changes. They will at least have to listen if many, many of us send letters.

 

Sorry Sasha - https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html

 

I' ve forwarded your letter to my relatives,. Hopefully a few more takers.
Mine was a bit wider ranging- for what it was worth


Dear Philippa Whitford,



I would urge you to attend the above debate on Tuesday 20th February 11-11.30am to represent many of your constituents who have M.E.



My daughter has M.E. She is now 16 years old and her life is her room. From being an active 14 year old with straight A grades, she can no longer read a book, nor walk along the seafront.

From knowing little of the condition, I was astonished at the lack of funded research, the quality of the research and the stigma attached to the condition- the latter being compounded by PACE trial hypothesis of " exercising yourself well".

We do know from biomedical research that this is one of the worst things a person can do. PACE has informed treatment protocols worldwide, with the result that significant harm has been done.



The PACE trial has a number of aspects which are unsettling and demand answers

• The use of Oxford Criteria, with a tailored selection of trial participants - this makes it unethical to extrapolate findings to the group as a whole. Oxford criteria provides a wide range of conditions and its use has been discredited. It is unlikely that many people with M.E were participants. Oxford studies should be set aside.
• Helsinki declaration issues - trial participants were not advised as to potential risks. Informed consent would therefore seem to be an issue.
• The results do not appear to correspond to patient experience - as evidence in many patient surveys by M.E charities
• There seems to be no basis for the hypothesis upon which PACE is founded. Indeed previous research by Dr White in 2005, found that exercise phobia did not exist in ME patients -https://www.ncbi.nlm.nih.gov/pubmed/15992572. So what changed? Arguably the increasing incidence of the disease and costs to state and insurance firms.

Is the chronic fatigue syndrome an exercise phobia? A case control study. - PubMed - NCBI
www.ncbi.nlm.nih.gov
J Psychosom Res. 2005 Apr;58(4):367-73. Research Support, Non-U.S. Gov't

• The previous FINE trial also produced a null result. It is convenient that FINE was published prior to data analysis being done for PACE - analysis of FINE data would likely have informed the outcome switching and changes to scale scoring that produced the reported results. The original ( pre FINE release) protocol would have effectively halved the results rendering little significance.
• The design methodology appears strange when compared with pharmaceutical trials - to have an unblinded trial with subjective outcomes is unscientific. Intervening with positive newsletters to participants during the process further biased results. Given that DWP funded this, surely return to employment would have been an endpoint? It seems very strange that due to protocol changes you could be considered as recovered at the start of the trial! Recovery also is defined with a high degree of disability - not as you may envisage normally.
• Indeed Jonathon Edwards ( Emeritus Professor UCL) has advised that they stopped such trials in Rheumatoid Arthritis in the 1980s as it demonstrated that if you tell people to think they are better, they will generally tell you that they are. It is pertinent that there were no improvements at long term follow up on PACE or similar CBT/GET based protocols
• The steadfast refusal to share data (even though publishing in PLOS makes this a requirement). There is still much data that is not available and may never be made available - is this acceptable for a publicly funded trial run by a university with an international research reputation? The spending of over two hundred thousand pounds of taxpayers money to avoid data disclosure.
• Subsequent release and analysis of some data has determined that the trial outcomes , as originally reported were invalid. In short reanalysis determines that CBT/ GET are not effective even for the control group. Please note that the CBT offered is not the generally supportive version offered to many chronic conditons, but one to address false ilness beliefs. Any CBT poorly delivered has the innate ability to place blame on the patient should it not offer improvement.
• The conflict of interest that the trial authors had - representing insurance companies and DWP to assess benefit claims (and lecturing on the insurance circuit to redefine M.E/ CFS as a psychosomatic condition to deny cover)
• The impact of PACE can be seen in the stigma that surrounds this illness, the misunderstanding that informs decisions and the continued harm GET in particular causes. This is easily evident - there is however another aspect. The use of PACE type methodology is common in psychological trials, and those for M.E/CFS . There is a large volume of work informing other conditions which are deemed to have a psychological aspect - fibromyalgia/ IBS etc conducted on the same basis, with the same issues of interpretation. These are now informing the policy direction for MUS. Effectively chronic illnesses are being recategorised ( CFS is now in the MUS basket and not a neurological condition).
• This is particularly concerning as draft guidance for MUS recommends not referring patients for further investigation of symptoms - I have known of two teenage girls last year diagnosed with cancer (Hodgkins Lymphoma- stage 2 and stage 4)- not investigated earlier as their symptoms were put down to M.E - this is the legacy of PACE and this is why it has to be challenged.

A null trial result is a positive outcome - it is as valuable to see what does not work as what does. Unfortunately dressing a null result up as a positive utilising questionable methodology has produced numerous similar studies which cannot stand if PACE is retracted. That is the nub of the problem.



Other countries can see the flawed logicderiving from a PACE view of the illness and have adjusted their protocols- there is no biomedical evidence for deconditoning and exercise avoidance, there is much evidence for a systemic multi system condition. Sadly little biomedical research is done in UK, though we were world leaders in ME research in the 1980s, and have some of the best genetics and biochemistry teams in the world - just think what they could have achieved with five million pounds of funding.



There are great positives in current research. There is hope that effective treatments can be found. It would be fantastic if our biomedical researchers could be a bigger part of cracking this - the last major disease. We can only move forward in UK if we see PACE for what it is, what it has caused and educate those in medicine as to what the condition actually entails.



I hope that you will support this debate as the first step in bringing these issues to a wider public, and being an agent for change. I now live in a world where even small changes would mean so much.



Thank you



kind regards

 

Thanks very much for that @Sasha, I couldn't get the MEAction form to work either, so have just sent a slightly modified version of your letter to my MP.

 

Any MP who gets half a dozen letters on this might pay attention!

 

You make some very good points there but I'd generally caution people against writing such long letters to MPs (yours is over 1,100 words). MPs are very busy people and I wouldn't have thought they'd be likely to properly read something so long.

Just my view, though. And it's good if they receive a variety of letters rather than just the same form letter over and over (although it's well worth sending in the form letter, for those who can't otherwise write in).

 

Yes, a bit of a rant in retrospect. Unfortunately verbosity is encouraged in my profession.

 

thank you for the great letter.

but could there be a catch? i propose adding one sentence. i hope the following is wrong.

everybody "knows" what kind of disease it is: trivial or nonexistent. maybe a big problem for doctors. or worse.

therefore, if you don't mention the need for biomedical research, or severity [this changes perception about disease model for free], an assumption will be made.

that assumption is that all that is needed is another non-treatment.

/we/ know that it is wrong to allow policy to be controlled by a well-organized gang or gangs of academics, who should not be connected to the disease. this message could be lost prior to the debate. /mps/ might not know.

the concern is that if pace goes down, then "mistakes were made" and "we have corrected that" and "we have a new and improved set of 'evidence-based' [for example, psycho-woo] treatments".

certain mps might even think that that is what we are asking for?

 

@Samuel, the purpose of the email is just to get MPs to go to the debate.

 

I'd written my own letter a few weeks ago. Absolutely no response from my MP, which is about par for the course.

 

At least you did it! If enough of us write, hopefully it will create a tipping-point, even for MPs who aren't initially on board...

 

I've just found reference to the debate: https://www.parliament.uk/mps-lords-and-offices/offices/commons/speakers-office/wadjourns1/

It's listed as:

11.00am - 11.30am - PACE trial and its effect on people with ME
To be moved by Carol Monaghan, MP for Glasgow North West

(Sorry if this has already been posted!)

 

Have written to my MP. She is very busy - she's one of the really hard working ones - so doubt she'll be able to attend, but at least I've done my best! She will be sick of getting emails from me - seem to write to her half a dozen times a year at least! She really is great though, and either gets back via email or by post.