Petition: Opposing MEGA

[Jo Best]

Recent comment on Opposing MEGA petition - https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/527440829

I am an ME patient of long-standing, desperate for a cure, and oppose MEGA due to the involvement of PACE researchers Peter White, Esther Crawley and any others, whose presence on MEGA will continue to do serious and lasting harm to ME patients, as they have already done for many decades now. Their presence on the research team calls into question the soundness, calibre and ethics of the MEGA research project, and degrades all serious researchers involved.
L B, Aylesbury, United Kingdom
50 minutes ago

 

[Jonathan Edwards]

@Jonathan Edwards If the Mega study is going to try and subgroup the CFS patients selected, would it matter even if one subgroup turned out to have a genetic marker for hypochondriasis ( although in that case they would have been misdiagnosed and not have CFS)? Would this not result in being able to distinguish between the two groups of people - those with an actual M.E./CFS illness v. healthy hypochondriacs i.e it would be a win-win situation as some people could be unequivocally diagnosed with hypochondria based on a biomarker and those who are not positive for this marker would then be a purer sample to do further CFS research on in the future so there would still be research progress?

I think that is a fair point, but the question is how you know how to subgroup so that you can pick up the association that only shows up with subgroups. There may well be physicians who can distinguish the two groups but if most physicians think they are all hypochondriacs that seems unlikely.

I actually think finding a genetic marker for hypochondriasis is quite plausible and might as you say help sort things out. Some so-called personality disorders do have genetic weighting, although I do not know if anyone knows what the genes are. Genetics may not just be coding for proteins. Variations in non transcribed areas may do all sorts of strange things.

 

[Jonathan Edwards]

I'd like to offer (one) patient perspective on this. While I'm sure that, by definition, hypochondriacs like seeing doctors, the issue is to what extent the non-hypochondriacs are willing/keen to do so. Maybe for a lot of ailments the worried well will dominate consultations. But mecfs is different (demonstrably) because of the severity of the illness and the impact on our lives - it's functional impact is substantially worse, on average, than MS and RA in both clinical and population samples. Peope who have lost their livelihood (or are struggling to keep it), their social life, maybe their marriage too, are very likely to seek medical help, and press for whatever further help is going in a desperate attempt to recover some of their life. That makes the 80% figure, or anything like it, hard to understand in my view.

You could also argue that the same problem would taint most research done to date: hypochondriacs dominating (or at least being well-represented) in private and public clinics, not 'real' patients. If that's the case, we have serious problems.

You may be right but how many ME patients will make repeated long term attendances at clinics where the clinician takes the view that they have inappropriate illness beliefs? People with RA are generally frightened enough of the destructive power of their illness to keep going to clinic - an probably MS too. The RA patients who are doing well and keeping down a job are keen to come to make sure they stay well. For someone with ME I am not sure the incentive is as strong. I honestly do not know. What others have said suggests it may be complicated. There certainly seem to be some people who prefer never to see a doctor if they can help it.

I think I would argue that the problem probably does taint most research to date. I worry seriously about research that recruits self referred patients from the internet. It may not in fact be a problem but recruitment bias is the first thing one worries about in an clinical research.

 

[lilpink]

There certainly seem to be some people who prefer never to see a doctor if they can help it.

Only in terms of the present climate. I'd love to see a doctor who would fully believe me, understand my disease and give me some sort of treatment option as I daresay those with RA and MS receive. If there's an implication that people with ME aren't "frightened enough of the destructive power of their illness" to access help this couldn't be further from the truth. We are all too aware of the destructive power of ME, the QOL scores being on average below those two other diseases you mention. But many of us have been so badly 'iatrogenically' damaged that we fear interactions with the medical profession, not in any 'perverse or aberrant and neurotic' sense, but because our own personal histories have led to us knowing that our best chance with this disease tends to be 'avoiding doctors'.

 

[batteredoldbook]

The argument against supporting MEGA in a nutshell:

~ We don't have to trust. We have science. We ask questions.

>Patients have expressed a reasonable doubt over whether UK
>medical research is following the scientific method.
>
>Let that sink in a moment. If your jaw's not on the floor then re-read it.
>
>On this basis I ask all researchers involved with the proposed
>MEGA study the fair question below. Further I ask all those
>involved in MEGA to ensure that each researcher
>has been made aware of it.
>
>"Is the PACE trial good science & can research
>& treatment be safely founded upon it?"
>
>@batteredoldbook
>16:27 27/10/2016

 

[Jonathan Edwards]

Only in terms of the present climate. I'd love to see a doctor who would fully believe me, understand my disease and give me some sort of treatment option as I daresay those with RA and MS receive. If there's an implication that people with ME aren't "frightened enough of the destructive power of their illness" to access help this couldn't be further from the truth. We are all too aware of the destructive power of ME, the QOL scores being on average below those two other diseases you mention. But many of us have been so badly 'iatrogenically' damaged that we fear interactions with the medical profession, not in any 'perverse or aberrant and neurotic' sense, but because our own personal histories have led to us knowing that our best chance with this disease tends to be 'avoiding doctors'.

Yes, I guess that was the sort of view I was basing my original comments on.

 

[Aurator]

But mecfs is different (demonstrably) because of the severity of the illness and the impact on our lives - it's functional impact is substantially worse, on average, than MS and RA in both clinical and population samples. Peope who have lost their livelihood (or are struggling to keep it), their social life, maybe their marriage too, are very likely to seek medical help, and press for whatever further help is going in a desperate attempt to recover some of their life. That makes the 80% figure, or anything like it, hard to understand in my view.

Simon, just because an ME/CFS patient tells a doctor they have "had to" give up a good career, fulfilling hobbies, their friends, or even their family, just to survive everyday life with this illness, this does not constitute satisfactory evidence that the functional impact of the illness on that patient's life is severe. Even if the doctor goes to the trouble (s/he rarely will) of obtaining independent verification that the patient has indeed given up these things, there will still be the very real possibility in the doctor's mind that the patient may have nothing physically wrong with them and simply have poor coping skills and /or personality traits that for some reason render them incapable of feeling capable of living the life they once led.

However rationally and articulately a patient tells their version of events to a doctor, however evident it is that the patient's life has been transfomed by what the patient perceives as a state of ill health, if the doctor has no independent verification, in the form of medical tests, that there is genuinely something physically wrong with the patient, the doctor may understandably feel s/he has good reason to remain sceptical as to whether the patient has anything physically wrong with them at all.

Being disbelieved is one of the most fundamental truths of this illness. How excruciating this disbelief can be to the person on the receiving end of it is something that most people only gain any insight into in the pages of dystopian fiction. That fictional world is our reality.

 

[daisybell]

@Aurator that exact scenario happened to me with my last rheumatology appointment - the doctor expressing how pleased he was that I was so well whilst I was saying how much I was sad I had needed to stop working etc etc....
On the face of it, it's a throwaway comment by a medic, but on the receiving end when your life has shrunk to a shadow of what it was before, and you feel awful all the time, it's a devastating thing to hear expressed so glibly.

Unless I am seriously worried that ignoring a symptom might be very dangerous, I see no point in going to a doctor now.

 

[Marco]

@Aurator
Unless I am seriously worried that ignoring a symptom might be very dangerous, I see no point in going to a doctor now.

I could elaborate but that's about the height of it for me.

 

[JohnCB]

the doctor expressing how pleased he was that I was so well whilst I was saying how much I was sad I had needed to stop working etc etc....
On the face of it, it's a throwaway comment by a medic, but on the receiving end when your life has shrunk to a shadow of what it was before, and you feel awful all the time, it's a devastating thing to hear expressed so glibly.

The looking well bit is a real problem for us.

I really do think that many doctors are sleep-walking through appointments, with their mouths running on auto-pilot and their brains somewhere else entirely. One GP appointment I attended started
GP "How are you?"
Me "I seem to be rather worse."
GP "Oh, good."
Then there was a moment of realisation and the GP had the decency to look embarrassed briefly.

Unless I am seriously worried that ignoring a symptom might be very dangerous, I see no point in going to a doctor now.

I could elaborate but that's about the height of it for me.

I need to keep seeing a GP regularly as I need medication for both other co-morbidities and for serious painkillers. On top of everything else I need to worry about the risks of polypharmacy.

 

[snowathlete]

I don't think Stephen knows anything about website design and production and I doubt if any of the -omic people on the MEGA planning group know anything about how to set up a website, or have the time to investigate and organise one right now

It's well outside my radar as well

But how many medical research studies that are still in the planning stage have websites with interactive blogs etc?

Not many…..

Probably the majority when it comes to research studies that are asking for patients to endorse it, I'd have thought.

But I don't think it extraordinary that those running MEGA may not realize how simple, quick and cheap it is to set up a website in some form though and they may not have the skills or confidence to set one up even though there are non-technical options. So I do think a bit of patience needs to be applied in this case, though it has also been a few weeks since people started pointing out a website was sorely lacking, so patience may be wearing thin for some...

I think this is the sort of thing where if MEGA properly addressed concerns of patients they'd find there are benefits. Patients with ME/CFS are hugely supportive of appropriate research and often volunteer significantly to supporting in practical ways: websites, graphics, articles, fundraising, etc.

If they fix the major problems, I expect patients like myself would be keen to help, we'd be willing to volunteer to set things like this up for them and help take the load off. So another good reason to appropriately address the problems with the study in my opinion.

 

[snowathlete]

You may be right but how many ME patients will make repeated long term attendances at clinics where the clinician takes the view that they have inappropriate illness beliefs? People with RA are generally frightened enough of the destructive power of their illness to keep going to clinic - an probably MS too. The RA patients who are doing well and keeping down a job are keen to come to make sure they stay well. For someone with ME I am not sure the incentive is as strong. I honestly do not know. What others have said suggests it may be complicated. There certainly seem to be some people who prefer never to see a doctor if they can help it.

I think I would argue that the problem probably does taint most research to date. I worry seriously about research that recruits self referred patients from the internet. It may not in fact be a problem but recruitment bias is the first thing one worries about in an clinical research.

It's even more complicated a picture, I think. In my case I have a supportive GP. She is kind, and genuine, and does not believe the disease is behavioral, but is a physical disease. And she knows it is severely debilitating. However, she can do practically nothing for me. She can only follow the NICE guidelines. She can refer me to CFS "specialists" who will offer me CBT and GET (I will never go there again until it can actually offer something worthwhile). She can prescribe me sleeping tablets and has. But that is basically all she can offer me. So I never go to see her about my ME any more, and haven't for years. It's a complete waste of time and energy and I have to make decisions all the time on what is a worthwhile use of energy. This is never it. The only thing I go to my GP for are health issues unrelated to ME. I bet this is the case for the majority of patients with genuine ME once they have reached year one or two of the disease and experienced all the NHS has to offer. We are on our own, have a completely unmet need.

 

[Sasha]

Yep, same here, @snowathlete - and yet, surely we're on their books as ME patients, such that if there was a study we'd be called up? Or wouldn't we be, @Jonathan Edwards? Would studies such as this only recruit new patients, even if it was done through GP practices?

I don't know how this works administratively.

 

[JohnCB]

But I don't think it extraordinary that those running MEGA may not realize how simple, quick and cheap it is to set up a website in some form though and they may not have the skills or confidence to set one up even though there are non-technical options. So I do think a bit of patience needs to be applied in this case, though it has also been a few weeks since people started pointing out a website was sorely lacking, so patience may be wearing thin for some...

I think this is the sort of thing where if MEGA properly addressed concerns of patients they'd find there are benefits. Patients with ME/CFS are hugely supportive of appropriate research and often volunteer significantly to supporting in practical ways: websites, graphics, articles, fundraising, etc.

I don't think cost and personal web skills come into it. University researchers spend half their time in front of PCs. Scientists have had programming skills since the introduction of Fortran. As an undergradute in 1970 I was expected to produce such a program.

No, they use IT and the internet routinely. This is what the internet and then the web was invented for. Universities have IT departments. Universities run their own websites. White and co put their PACE stuff up on their university website.

The fact that there is no CMRC/MEGA web presence can only be a matter of choice. They don't need anyone to show them how. I still think you are right that it would benefit them to do so.

 

[JohnCB]

Yep, same here, @snowathlete - and yet, surely we're on their books as ME patients, such that if there was a study we'd be called up? Or wouldn't we be, @Jonathan Edwards? Would studies such as this only recruit new patients, even if it was done through GP practices?

I don't know how this works administratively.

When I looked at my blood tests on the GP group website, I found that they were tagged with my main diagnoses, including CFS. I would guess that my group and most other GPs could print a list of CFS patients with a click of the mouse or two.

 

[Jo Best]

This latest comment resonates (https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs/c) -

I struggle daily now 8 years killing me slowly

Wilsonangela, middlesbrough cleveland, United Kingdom
46 seconds ago

 

[char47]

Or do they accept that nothing has changed, as far as they can see nothing will change in their lifetime, and stop going, and by doing this, they stop the drain on their energy of getting to the doctors, of vainly attempting to explain how badly their lives are affected, and the disappointment of being rejected, yet again. My experience is of the latter.

Yes I am in the latter camp also. I'm also conscious that with 'minor issues' which others might take to their GP I conversely avoid such contact on the basis that I'm very aware that 'over consultation' is deemed an expression of psychosomatic illness. So too if you attend with more than two symptoms etc etc. Thus I'd argue that most people with authentic ME stay away from their primary practitioners unless or until something so dire occurs that they have no choice.

Sadly i fall into this camp also, in fact i am actively afraid of going. My gp is a kindly man, but i'm certain he thinks it's a psychological problem & happens to be sympathetic to that. I am always really afraid he'll start with the CBT/GET recommendations so I NEVER see him for my ME, & I havent sought medical attention for anything for yrs, except a dodgy looking mole. - I had agonising shoulder pain for 6mnths & just saved up to see an osteopath & a private physio (dx frozen shoulder). No one could understand why i didnt go to the gp.... but at least people here do. I'd love to get some medical care tbh, but whats on offer through the NHS isnt better than nothing, & the fear of going often & being labelled a 'frequent flyer/hypochondriac' is very pertinent too.

Being disbelieved is one of the most fundamental truths of this illness. How excruciating this disbelief can be to the person on the receiving end of it is something that most people only gain any insight into in the pages of dystopian fiction. That fictional world is our reality.

Yeah
edited to add, although being told that they believe you're 'ill', but could get better, & by not doing the things that you know would make you worse you're simply choosing to stay ill, is even worse imo. It's a wonder psych institutions arent full of pwme - having been sent completely insane by that!

 

[Jonathan Edwards]

Yep, same here, @snowathlete - and yet, surely we're on their books as ME patients, such that if there was a study we'd be called up? Or wouldn't we be, @Jonathan Edwards? Would studies such as this only recruit new patients, even if it was done through GP practices?

I don't know how this works administratively.

My understanding is that GP records are now standardised and computerised enough for everyone with ME/CFS to be identifiable at the press of a button or three.

For a consultant in a clinic like me it was at least until recently possible to use whatever diagnostic labels one fancied, or not use any much, because very often nothing specific depended on a label. We did not write sick notes and only rarely signed benefits forms. So the lists of ME or CFS patients from clinics may be very vague and incomplete. On the other hand GPs have got into the habit of using diagnoses in a much more formalised way, for benefits purposes etc. and because pretty much all of their activity is audited b diagnostic category. That has its downside because GPs may not get the diagnosis right (nor may consultants for that matter) but in this context it seems to me that a trawl of primary care is much more likely to give a consistent picture and to pick up severe cases than a clinic trawl. I see no reason why only new cases would be included. New cases might show differences in metabolism or cytokines, but not genes.

 

[Barry53]

Crawley is rumored to rediagnose CFS patients with pervasive refusal syndrome when they don't respond to CBT

Why is it the medical profession seem to have their own syndrome: if they cannot explain a condition, they have to invent one they can pontificate on. Arrogance in the extreme. Feels akin to the middle ages inquisitions.

The RCPsych own words:-

Pervasive refusal syndrome ... is characterised by a profound and pervasive refusal to eat, drink, talk, walk and engage in any form of self-care.

http://apt.rcpsych.org/content/10/2/153.abstract

My wife does all of these things, whenever she has enough energy to do so. Like most ME sufferers I imagine, she is desperately keen to do as much as she can.

 

[JoanDublin]

The looking well bit is a real problem for us.

I really do think that many doctors are sleep-walking through appointments, with their mouths running on auto-pilot and their brains somewhere else entirely. One GP appointment I attended started
GP "How are you?"
Me "I seem to be rather worse."
GP "Oh, good."
Then there was a moment of realisation and the GP had the decency to look embarrassed briefly.

Ha! I can even go one better than that.

My 14 yr old had to be helped into the waiting room, Hood pulled right up, scarf wrapped around every part of his face with a small slit for his eyes because of awful light and noise sensitivity. He eventually lay on the floor cos he couldnt sit up. His doc actually stepped over him at one point. When it was his turn to go in to see him I had to rouse him and sort of prop him up as we walked in. He sat in front of the doc with the hood and scarf etc the same way. Doc says: 'You're looking well today'.

Sometimes you cant win - even when you look like death