Petition: Opposing MEGA

[Snowdrop]

The CMRC is a very 'big tent' that includes clinicians and researchers who hold a wide spectrum of views on both cause and management of ME/CFS. So there is debate, discussion and disagreement at times.

As someone who believes it is far better to be inside groups and organisations that have real influence, especially when it comes to research, than criticising (or even shouting) from the outside, I am a member of the Board of the CMRC.

Shouting from the sidelines is all that is available to most and our lives are at stake so that seems like an explanation. Since the research directly affects us in the most comprehensive way one would expect to be listened to to some degree.

From all that I can tell the really big movement forward for ME has in fact come from the outside (D Tuller, J Rehmeyer, Jen Brea and many others). Perhaps we'd have a better appreciation for the inside the tent approach if we understood the real changes taking place as a result. Perhaps they've been overlooked.

 

[JohnCB]

Just a few quick uncoordinated words as I am quite inclined to put my head over the parapet and be "vexatious".

I admire @charles shepherd for the position he has held for some decades and the work he has done over those years has been tremendous. I do note that he supports MEGA but it is also apparent that he has reservations. It seems to me that there are things that he seems unable to say for whatever reason and I think he is in a difficult situation at present. I support him and his work at MEA. I am a member of MEA.

My own views about MEGA coincide with what seems to be the consensus on PR and elsewhere.
- I object to the involvement of Dr. X and Dr. Y. We mustn't forget about Sir Z either. He's involved and I am not at all happy about that.
- It needs to recruit patients using robust criteria, not fatigue posing as CFS.
- It needs to have a representative measure of moderate and severe patients or it is meaningless. A study of fatigue is valueless to me.
- I can't see that recruiting from fatigue clinics will produce good results.

The 2003 campaign MEA against PACE was mentioned. I signed up to that. I was going to say that I am sad so little has changed. But I am not, I am totally ****ing angry about it. From the tone I have seen on this thread I am clearly not the only one.

I do support a proper MEGA-type study that will do good science and not be sucked into the gutter by the BPS school "scientists". CMRC is obviously heavily political and it stinks. When CMRC was launched it was supposed to be about ME. It does not seem to be now.

I have been ill for a long time. MEGA is going to take years. It's unlikely I will see the results. It is shameful that my generation of ME sufferers have been treated so badly. It is shameful that the generation of ME sufferers before me were treated so badly. It goes past shameful that the generation after me will be treated just as badly.

 

[Ysabelle-S]

I have been ill for a long time. MEGA is going to take years. It's unlikely I will see the results. It is shameful that my generation of ME sufferers have been treated so badly. It is shameful that the generation of ME sufferers before me were treated so badly. It goes past shameful that the generation after me will be treated just as badly.

I particularly empathise with that part of your excellent post, John.

 

[Marky90]

Its just astounding that neither researchers from MEGA, nor Charles, seem to understand the serious nature of the issues being raised.
If they did grasp it, they would respond.
They don`t.

And to sink to the level of insuniating that the disagreeing oneas, are "shouting". Well, wow. Someone is starting to sound like some particular PACE-authors.

PS: dont bring up as a argument that you are using your time as ME-sick, in this project. Personally I am spending every frigging day trying to fight BS like this upcoming MEGA-study (in its present form). I know most people are not as direct as me, but i like to call a spade a spade when i see one. And this particular spade, is one we all should disagree about its current nature.

 

[lilpink]

I can't see the BPS proponents voluntarily relinquishing their role in MEGA, and it would be extremely unpleasant for the scientists to try to oust them.

My fantasy solution is for MEGA to be closed down and all the real scientists to shift seamlessly across into a new group that includes genuine ME experts as its advisers, perhaps under the umbrella of Invest in ME in conjunction with the ME biobank and genuine patient representation through such groups as PR, MEA and Tymes, and with strong links to international researchers, perhaps even making it a joint project with research groups in Norway, USA, Australia etc who have proved themselves.

Don't wake me up yet, I've lost too much sleep over this already. Let me enjoy my dream....

That would be my ideal too, more or less, give or take 2 patient reps. Leaving the bare bones of MEGA in place even with all the 'corrections' in the world would never satisfy me that the structure hadn't been infested with woodworm... only later to be revealed after years of wrangling and FOIA requests. A bit like..oh you know? : that little 'PACE' thing.. .

 

[Jan]

It is so sad that we feel so distrustful, what a shocking reflection this is on ME research thus far in the UK. (psych research)

They have brought us to our knees and nearly destroyed us with their psych games, they have tainted every interaction we have with the medical profession. We count ourselves lucky if doctors ever take us seriously and believe what we are telling them.

We live in fear of having to attend A&E, I now wait as long as possible, even if on some occasions I feel like I am dying. That is how bad they have made the situation for us, we are afraid to seek medical assistance even if we feel our lives are threatened.

 

[Hutan]

If you want to gain some insight into how Professor Stephen Holgate views ME/CFS I suggest you have a look at this video from his presentation to the Edinburgh MESH group:

Thanks @charles shepherd

This 2014 presentation was interesting. Some bits relevant to MEGA:

3.20 Treatments are really ineffective in a large part. They are helpful but do not actually seek to offset the disease in terms of its underlying causes.
So, Prof Holgate essentially knows CBT and GET don't work - it seems we don't need to tell him that. So, thank goodness, the man can think. But it makes his enthusiastic correspondence with Wessley (wow!) and his willingness to have White and Crawley involved in both the CMRC and MEGA even harder to understand. These people have and are promoting CBT and GET as solving the cause of CFS - correcting the underlying false illness belief, the fear of movement, the deconditioning, the preoccupation with oneself.

3.50 There have been so many zealots thinking that their idea is the cause
Again, accurate in so far as it goes, but raises questions. Is he including the BPS school in his list of zealots or does he mostly mean XMRV? Is he leaving it ambiguous on purpose? He is, after all, speaking to a group of patients and carers and he acknowledges later that it is important that the CMRC has the co-operation of patients. Again, why would he consort with these BPS zealots and allow them to inflict their harm on patients (Lightning process for children springs to mind)?

7.15 Patients tend to think it is a physical condition and the medical profession tend to think it is a psychological condition. There is a perception problem.
Again, accurate but he's fence sitting. Who's perception is faulty? I note he isn't a patient.

10.45 The quality of research ... is really quite poor. ... much speculation and conjecture
Yep, accurate again. But why facilitate more such poor research? Why not join the fight to get the PACE data released so that the problems with so much of the BPS research can be understood and not repeated? Why allow patients to suffer when the treatments supported by this poor research are forced upon them? Why be surprised when patients express their displeasure about the quality of the research?

11.30 My belief is that we need to forget all that stuff that went on in the past, draw a line under it all.
Ah, perhaps this hints at an answer for this great difference between what he is saying and what he has done. Prof Holgate does seem to care a bit about patients but he is very much of the establishment. Those patients may have been given a rough trot in the past, but let's all pick ourselves up, pull our socks up and march forward, chaps, as one big happy team, with me leading. (yeah, I know, damn antipodeans don't know their place).

And maybe forgetting about the past and starting afresh would be fine. Except its not just stuff that went on in the past. It's still going on. Most doctors in the world who actually know what CFS or ME is know that the treatment is positive thinking, CBT and exercise. No one in the UK establishment or Cochrane has corrected this view even though it seems the Chair of the UK CFS/ME Research Collaborative has known well since at least 2014 that the treatments are ineffective. The manipulation of data that went on in PACE was extraordinary and researchers who did that are still feted as ME experts and invited to help design more research. Crawley is still getting children to do GET and loudly proclaiming that they love it.

Prof Holgate did at one point express surprise at how many patients rated their illness level as severe. At the beginning he says that the illness can be quite debilitating, especially at the more severe end of the spectrum. Well, yes. Actually, even a 'mild' level is life changing and awful. I wonder if he has actually seen bedridden ME patients? Surely he has, but if not, then that might be one way to help him understand the seriousness of what some of his colleagues have done and why they can not be allowed to continue to work in the ME field.
......
Then there follows detail about genomics, proteomics, personalised medicine and the establishment of the CMRC to bring scientists from many different fields to work on sorting out ME.
......

43.10 And that sort of research is going to require tremendous co-operation from the patients on one side and the highly sophisticated researchers on the other.

talking about the CMRC conference...
We have got a whole day of science. But then we've got a half a day for patients and carers to come and interrogate the scientists about what they are doing and, hopefully, help join us on this journey.

Cos, like, we need your DNA. Oh, yeah, your brains too probably. Oh? No, not for your ideas you dear unsophisticated patients, I mean to look at in an MRI machine. (I know, that comment is mean-spirited of me.) Prof Holgate is trying to talk about patient participation, but I think it doesn't come naturally to him.

on one of the slides about the CMRC
* Work collaboratively and professionally
*Not harass or abuse researchers

So, all in all, the video left me still with many questions. I hope Prof Holgate will come on to PR to explain why White and Crawley have a place in MEGA and the CMRC.

 

[daisybell]

I don't see in the above any room for the possibility that a) the researchers might not be highly sophisticated, b) the patients might be highly sophisticated and knowledgeable or c) that researchers can actually learn a lot from patients - listening to them, rather than 'experimenting' on them....

The underlying theme seems to me that Prof Holgate might be a nice man but he still thinks ME patients are likely to be deranged/dangerous/irrational because he thinks much more of his colleagues than he's ever going to think of a mere patient.

So I'm not convinced in any sense.

 

[JaimeS]

I don't see in the above any room for the possibility that a) the researchers might not be highly sophisticated, b) the patients might be highly sophisticated and knowledgeable

Story of our lives.

 

[slysaint]

Shouting from the sidelines is all that is available to most and our lives are at stake

Exactly, what else can you do when those (on the CMRC) who are supposed to be representing us and fighting our corner have let it all happen, not just now but for many years.

 

[Cinders66]

In a way the faults of MEGA are the offspring of the faults of the CMRC which in its way was a continuation of the faults of the UK medical establishments approach. I don't think fatigue umbrellas, compromise over labels, working as part of broad churches etc work. Many in the politically active/informed or vocal minority whatever you call us, were concerned about working with the MRC in the way they asked - we were concerned that ME was being lost in fatigue and that key people like White and Crawley were given prominent roles. Whatever Holgate presented to patients at a meeting, his views have AFAIC been in line with the establishment , perhaps thinking there needed to be more emphasis on the biological but still in of support for CBT/GET and loose criteria. Frankly if you consult Wessely and sinogn letter to media in support of Wessely's award for bravery (error, arrogance, stubbornness, callousness) in the CFS field you have at least some sympathy for the Wessely school and support of the uk establishment CF'S approach.

I don't think Holgate has ever met anyone severely ill with ME, the severe had a single presentation at the CMRC conference this year but that connection with the "real world" of ME sufferers suffering doesn't seem there. In a way it makes his being prepared to work for the field admirable but it has had the urgency of someone working for the Syrian crisis who had never been to Syria, seen anything on tv about Syria and thinks plodding on in a "one day we will resolve this" way is fine.
Whilst patients don't want E Crawley doing ME research,do we really expect the deputy chair of CMRC to be asked to step aside here?

 

[Cinders66]

I guess the CMRC charities think getting this type of research out of a messy compromise situation is actually a result for patients and we should welcome it.

One concern I have is IF the MEGA research is taking the position that NICE criteria can't be subgrouped until it's published around 2021,2022, does that mean status quo remains until then and how much other valuable research will a uk cfs fatigue umbrella generate in uk in the meantime for those with actual ME and severe ME?

 

[Countrygirl]

Here is Prof Hooper's comment on the Omega petition.

 

[JoanDublin]

Heres a link to what Prof Hooper and Margaret Williams had to say about Mega

https://opposingmega.wordpress.com/...-and-margaret-williams-comment-on-mega-study/

 

[Keela Too]

Here is Prof Hooper's comment on the Omega petition.

Link to Prof Hooper's comment on the Opposing MEGA petition. Worth "liking" I think:

https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/524776730

 

[thegodofpleasure]

Would you please explain why you won`t support such steps @charles shepherd? Cause if not, I am pretty bewildered.

Are you listening @charles shepherd ?

Once again, Invest in ME and people like Malcolm Hooper, Margaret Williams and Jonathan Edwards are leading the way and making you look a bit out of step with patient opinion.

I think that it's high time that the MEA cast off the shackles of their membership of the CMRC and had the balls to criticise the unbelievable shambles that has been the birth of the MEGA study.

In fact, if the MEA want to retain the confidence of the patient population, they should send out a clear and positive message by leaving the CMRC altogether.

 

[trishrhymes]

Are you listening @charles shepherd ?

Once again, Invest in ME and people like Malcolm Hooper, Margaret Williams and Jonathan Edwards are leading the way and making you look a bit out of step with patient opinion.

I think that it's high time that the MEA cast off the shackles of their membership of the CMRC and had the balls to criticise the unbelievable shambles that has been the birth of the MEGA study.

In fact, if the MEA want to retain the confidence of the patient population, they should send out a clear and positive message by leaving the CMRC altogether.

I feel your frustration, but I think this comes across as unfairly hostile to @charles shepherd who has devoted many years to unpaid help and advocacy for ME sufferers. He is on our side, and has been clearly critical of PACE etc. and is busy today advocating for us in parliament.

I am a member of the MEA, and, while I don't necessarily agree with everything it does, I value Dr Shepherd's work highly. I assume it was a decision of the MEA board to participate in the CMRC on the grounds that it's better to try to influence from within if one can. I may not have made the same decision if it were up to me, but I can see their reasoning.

Dr Shepherd has made it clear he is unhappy about some aspects of MEGA and is trying to influence it, even though he's not part of its planning group. I think that is a good thing. And he's listening to our comments here, even if he does get a bit frustrated when people, including me, are so pessimistic about MEGA.

By all means suggest the MEA withdraw from the CMRC, but lets reserve our hostility for those who really deserve it, like Wessley, White and Crawley.

 

[Ysabelle-S]

I feel your frustration, but I think this comes across as unfairly hostile to @charles shepherd who has devoted many years to unpaid help and advocacy for ME sufferers. He is on our side, and has been clearly critical of PACE etc. and is busy today advocating for us in parliament.

I am a member of the MEA, and, while I don't necessarily agree with everything it does, I value Dr Shepherd's work highly. I assume it was a decision of the MEA board to participate in the CMRC on the grounds that it's better to try to influence from within if one can. I may not have made the same decision if it were up to me, but I can see their reasoning.

Dr Shepherd has made it clear he is unhappy about some aspects of MEGA and is trying to influence it, even though he's not part of its planning group. I think that is a good thing. And he's listening to our comments here, even if he does get a bit frustrated when people, including me, are so pessimistic about MEGA.

By all means suggest the MEA withdraw from the CMRC, but lets reserve our hostility for those who really deserve it, like Wessley, White and Crawley.

I totally agree.

 

[Jan]

The only thing I would add is that being ''nice'' and ''polite'' has got the MEA, (and us), nowhere. We need the patient orgs to make their opinions more vociferously, to make demands. We could learn a lot from the those who campaign in the US, it has actually got them somewhere. We are still in the dark ages, not moving forwards. The PACE data was only released because of a patient FOI request.

 

[Marky90]

We need to seperate warranted criticism from personal criticism. This is not about nobodys feelings, its about our lives