Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

Sly Saint said:
You appear to have missed @Suffolkres actual question
Click to expand...
"......So now AfME have said (in a roundabout way) that they do not support PACE and its conclusions, will they now similarly condemn Crawley's research (MAGENTA, FITNET-NHS and others) as it all heavily relies on PACE as justification for its existence." Do we have a definitive answer to this please AfME?
 
Mithriel said:
The very first ME association newsletter I read (about 1985!) had an article which said that ME patients had a "ceiling" to how much improvement they could make. Some people could make a dramatic increase but then it would plateau, others were already living at their limit.

I agree that the only useful advice from health professionals is to do less. I've never met or heard of any person with ME who did not do too much if they had the slightest chance - and I don't mean "boom or bust" is a sensible theory either. If we had a treatment we would all be doing more tomorrow.

If all these so called ME specialists actually spoke to patients they would know that.
Click to expand...


Even better if they really listened to patients...and carers/advocates...scientists/reasoned criticism of trial changes...
 
Action for M.E. said:
Thank you @Trish, I will make sure we clarify this.
Click to expand...

I note you haven't addressed the factual error about AfME's involvement only starting in 2007 which I raise here.

https://www.s4me.info/threads/actio...s-for-m-e-position-statement.5532/#post-99817

If you want evidence, I can provide you with the 2002 application to the MRC made by the Principal Investigators which includes a letter of support from AfME. I also have minutes of the second meeting of the TSC (September, 2004) that list Clark as attending on your behalf.

Since this is a question of fact, I would appreciate if you could alter your statement so that it is accurate.
 
With regards to BACME - quoting from the BACME guide for clinicians doesn't mean we endorse it.
Click to expand...


@Action for M.E., do you plan to remove the quotes from the BACME publication in your statement and any future literature? Or are you just going to leave it there because quoting according to you doesn’t mean endorsing? This is not clear to many as I am sure you know.

With your recent new promises of changing policy direction now solely focusing on biomedical research, you would hope that included making sure you didn’t include links to an organisation that clearly promotes the bps model of this illness. Mind you I note you only declared you don’t support PACE or the deconditioning theory, no comments on the bps model of ME. Nor have I seen any comments from you u on the new troublesome central sensitisation theory that like the deconditioning theory also recommends gradual increase in activity, despite decades of patients sharing increases in activity, however gradual, can not be achieved and often make many worse.

And, as others have said on here, do you plan to remove the suggestion in your statement - and any other literature written by you - to try and increase activity for any people with this illness and not as you have just said ‘some people’?
 
Last edited:
Action for M.E. said:
We are still reading and digesting everything on this thread - many thanks for the feedback shared so far.
Click to expand...
This seems to be a boilerplate response meant to postpone having to actually answer to anyone or make meaningful changes.
So instead of stonewalling us yet again when exactly is AfME planning on listening to the patients it claims to represent and stop playing both sides?
 
Dear @Action for M.E.

I would like to point out that the results from PACE made it very clear that GET and/or PACE style CBT do not work. Even when you use the widest possible criteria, that is guaranteed to include patients who do not have ME and who may even benefit from gentle exercise.

Therefore, I would suggest that PACE has effectively disproven the central sensitization theory in ME patients. If there were truth in the theory then that would have been reflected in the outcome of the PACE trial. After all the treatment for central sensitization is effectively the same.

I think it is time for you to openly reject GET and directive, PACE style CBT in all your literature. Regardless of the as yet unknown cause of ME these treatments do not work and, as evidenced by the MEA survey a number of years ago, may well cause significant harm. If my memory is correct you also surveyed members and those results were fairly consistent with those of the MEA.

Thanks for acknowledging our comments and I look forward to hearing your response to those comments.
 
While I think that it's fair to focus on the problems with their statement, I also think it's worth repeating occasionally that this was still a positive sign of progress, and that if Action for ME do take the time to properly engage with people's concerns then that would be a really good thing too.

Action for ME have caused a lot of problems and it's inevitable that there's going to be a lot of frustration about that, but also, it's worth taking the time to recognise good changes as good changes, or else those Action for ME trustees who are opposed to making any positive changes could use that as an excuse for sticking to their old ways.
 
Esther12 said:
While I think that it's fair to focus on the problems with their statement, I also think it's worth repeating occasionally that this was still a positive sign of progress, and that if Action for ME do take the time to properly engage with people's concerns then that would be a really good thing too.

Action for ME have caused a lot of problems and it's inevitable that there's going to be a lot of frustration about that, but also, it's worth taking the time to recognise good changes as good changes, or else those Action for ME trustees who are opposed to making any positive changes could use that as an excuse for sticking to their old ways.
Click to expand...
This leads to them doing the same thing, playing both sides with the odd nod to reality. If they want our accolades they can reject alternative facts in their entirety and apologize for their blatant errors.
Then i will recognize their good deed.
 
Webdog said:
AfME stops talking when it is pointed out that their "do all kinds of research and see what works" philosophy can harm patients.
Click to expand...
Indeed and when harm is proven they don't want to accept it

AfME can't accept that poorly done research can be worse than no research at all. After all, they are just trying to help. :banghead:
Click to expand...
+1
Who is supporting them?
 
Alvin said:
Anyone else notice @Action for M.E. stopped replying...
Click to expand...

As one of the people making suggestions to AfME on this thread I am as keen as anyone to get answers, and to get them quickly. However, I am also realistic I think in saying that it is likely to take time. It's less than 2 weeks since we last heard from the AfME representative. I imagine detailed and quite radical suggestions some of us have made will need to be taken to the directors of AfME for consideration if they are to be acted on. I wouldn't be surprised if that process of discussion and decision making (if it is happening) will take a month or two. On the other hand our ideas may have been set aside. All we can do is wait.
 
Trish said:
As one of the people making suggestions to AfME on this thread I am as keen as anyone to get answers, and to get them quickly. However, I am also realistic I think in saying that it is likely to take time. It's less than 2 weeks since we last heard from the AfME representative. I imagine detailed and quite radical suggestions some of us have made will need to be taken to the directors of AfME for consideration if they are to be acted on. I wouldn't be surprised if that process of discussion and decision making (if it is happening) will take a month or two. On the other hand our ideas may have been set aside. All we can do is wait.
Click to expand...
This is only the latest in many threads telling them the same thing
 
Some of us have written to @Action for M.E. about this statement. The exchange is below.

While it's not everything we wanted, I think it is a good reply from Sonya.

Thanks to all those involved, including one other who helped with the drafting.


Dear Sonya,

We are writing to thank Action For ME for its recent statement on the PACE trial. We, and many other patients, welcome what has been said. None of what follows should be seen in any way to detract from our appreciation for that statement.

We would first ask you to address a factual error. AfME was involved with PACE from at least 2002 when a letter of support from the charity was included in an application to the MRC for the grant for the trial (1). Minutes (attached) for the Joint meeting of the Trial Steering Committee and Data Monitoring and Ethics Committee on 27th September, 2004, show Chris Clark attended as an observer on behalf of AfME. It is clear, then, that AfME's involvement did not begin only in 2007. AfME was involved from the application stage onwards. In the interests of accuracy and as we are sure the charity would not want knowingly to make a misleading statement, we hope this error will be corrected promptly.

We would also ask that you consider four matters arising out of the statement.

First, as you are aware, much of the work in revealing the flaws and poor conduct of the trial was undertaken by patients. These patients were vilified in the media, painted as unreasonable and science-deniers, compared to anti-vaxxers and the wilder, violent, militant fringes of the animal rights movement. This portrayal was deeply damaging and was personally upsetting to the patients involved. Patients feel AfME did not stand up for them on this issue and engaged for many years with those who were involved in painting this false, disparaging picture of them. We would hope that following on from AfME's statement about the trial and the implicit acknowledgement that these patients were in fact right all along, it would be possible also to make a statement that the allegations were false and caused considerable hurt to the patients.

Second, minutes (copies can be provided) of the Trial Steering Committee show that the Science Media Centre was asked to manage publicity for the trial publications. The SMC played a leading role in making the false allegations against patients and continues to brief journalists about them every time any paper on ME is published. When the reanalysis by Wilshire et al, which AfME quotes in its statement, was released, the SMC tried to undermine the paper by using 'experts' with a conflict of interest. It also published a factsheet on ME and an analysis of the reanalysis. All were criticized for making errors (Forward ME reaction on ME Association website here). It is known that individuals within the SMC have a particular view of the illness. It is no longer possible to consider the Science Media Centre as neutral on the subject of ME, and we would ask AfME to cut all ties with the organization and to issue a statement saying it has done so and why.

Third, all the faults in the PACE trial outlined in the statement apply to the SMILE trial. The intervention being tested is based on a false assumption about the nature of the illness; it seeks to persuade patients to ignore concerns about the consequences of activity; the criteria for inclusion in the trial were too broad; the main outcome is subjective in an unblinded trial; the outcomes were switched. We cannot see how AfME can make such a strong statement on PACE and not consider the same to be true about SMILE. We would also ask, then, that AfME makes a similar statement pointing out the same flaws in SMILE and disassociating itself from the trial and its claimed findings.

Fourth, we welcome AfME's rejection of GET and of any therapeutic approach that assumes ME is based on deconditioning. We would note that patient surveys, including AfME's own, consistently find large numbers of reports of harm caused by GET. We would ask finally, then, that AfME calls on NICE to change its guidelines immediately and stop recommending GET.

We would stress again how much we welcome the statement on PACE.

Please note we consider this email to be an open one and shall be sharing it and any response with other patients.

Thanks for your help.

Best wishes,


The Management Committee of the Science for ME forum

Graham McPhee

John Peters

Robert Saunders



Reply:

Dear John

Many thanks for your email, and for your feedback about our PACE statement, which I will share with the team. I appreciate the opportunity to respond to the further issues you have set out, and I’m going to address each one in turn.

With regards to the factual error in our statement, I understand that Clare has removed the 2007 date from this story so it is no longer misleading – many thanks for flagging this.

With regards to making an additional statement regarding the vilification of patients, this is something we are considering in the wide-ranging review of our digital and printed resources (ie. the update we refer to in our statement). You’ve referred to us engaging “for many years with those who were involved in painting this false, disparaging picture” and I am guessing here that you mean the researchers who led the trial, and the media. I have always tried to take a collaborative approach to moving the field forward and sometimes this means working with and/or alongside those who hold views I do not share. I apologise to those patients who feel they the charity did not stand up for them on this issue.

With regards to the Science Media Centre, we have no connections or relationship with the SMC. The only relationship we had was as part of the CMRC Board but, as they are no longer members, we have no contact with them.

With regards to the SMILE trial, we do not have any plans to undertake a critique of this or any other research in which we have had no involvement. While I question how likely the SMILE trial results are to have any meaningful impact on healthcare policy, I understand it has the potential to reinforce the stigma and misunderstanding around M.E. – something we strongly addressed in our statement on SMILE, along with the trial’s methodological limitations (eg. that the research team acknowledges they do not know which aspects of the treatment administered were the most effective).

With regards to asking NICE to change its guidelines immediately and stop recommending GET – As part of Forward ME, we have supported the Countess of Mar’s repeated requests to NICE to issue clear interim guidance, highlighting the risks associated with GET, while guideline CG53 is under review. NICE has repeatedly explained that they will not do this, and I see no value in committing more of our limited resources and capacity to this. Instead, we are engaging directly with healthcare professionals (eg. at the RCGP conference next month) to increase their knowledge and understanding of M.E. and the limitations/risks of the current guideline.

I thank you again for taking the time and energy to contact me directly, and I hope you and any other S4ME members feel welcome to do so in the future with any questions or feedback you have about our work. I understand that this response will be shared with other patients.

With best wishes

Sonya Chowdhury, Chief Executive, Action for M.E.


Response:

Dear Sonya,

Thank you for your reply, and for the correction about the date of AfME's involvement with PACE. We're glad to see the CMRC conference went well.

We look forward to reading your additional statement and hope you will be able to mention the hurtful vilification of patients. We welcome your apology.

We are glad that AfME no longer has any dealings with the SMC and hope also that you will not do so as long as the same people remain in position at the Centre.

We understand your position on SMILE and agree that the trial is not likely to have any impact on policy. We would note that, before it was folded into AfME, AYME played a prominent role in support of the trial. The fact that SMILE is being used to sell the Lightning Process causes us considerable concern and we would welcome a stronger statement from the charity stating clearly that there is no evidence for the effectiveness of the LP.

While we would prefer that pressure was maintained on NICE not to continue recommending GET, once again we understand your position.

Thank you for the offer to patients to contact with you with questions and feedback.

Best wishes.

Yours sincerely,

The Management Committee of the Science for ME forum

Graham McPhee

John Peters

Robert Saunders
 
You must log in or register to reply here.
Back
Top Bottom