ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

[Sidereal]

I think that being told this at sixteen would be incredibly hard.

I understand where you are coming from but should a 16-year-old girl who develops lupus be told there is a cure as long as she goes to psychotherapy and exercises?

 

[alex3619]

In the case of ME/CFS, I think we've seen this situation where there are various self-interested groups all pulling in the same direction, but all for their own reasons, and the resulting tide has been moving in a direction that's not in the interests of patients.

I think this is very much the case. Self interest can do what conspiracy can fail to do. It can corrupt, distort, and derail, and all with no conspiratorial paper trail. From the outside it might appear conspiratorial, but its really just people, and organizations of people, just doing their own thing to the detriment of some other group.

 

[Bob]

One reason why the situation for ME/CFS may change faster than we expect, is because the rate of change for scientific technology and knowledge is exponential, just like all other technology. The rate of scientific and medical progress is faster now than any time in history. Athough research dollars aren't being invested in ME/CFS specifically, money is being spent on loads of other related areas of research that may potentially have a direct impact on our illness.

Money is being invested in other areas of immunology and autoimmune illness where discoveries are being made all the time e.g. with regard to how cells function; Lab technology is transforming at a fast pace - we're always hearing of new technology being installed in labs; Immune modulators, autoimmune drugs and antivirals are continuously being developed; We're gaining more insight into autoimmunity and types of autoantibodies all the time; and insight into other diseases e.g. involving the mitochondrial and brain.

Also, other chance discoveries such as Fluge and Mella's may come about. And once we have one pharmacological treatment under our belt, then I think research should pick up pace, and funding become easier. More researchers will undoubtedly get involved. Hopefully the IOM and P2P reports will change things drastically too, but that remains just a hope at the moment.

Dr Lipkin and Dr Hornig are working on finding biomarkers, and treatments, and they're even looking for a cause. They're just beginning to look at NK cells using new technology, and they seem to be doing a vast range of investigations. So something might come from their work. And there are quite a number of other high profile researchers who have recently entered the field. And people like Nancy Klimas, and her partners, are doing an incredibly wide range of research projects. The CDC are even doing biomedical work now in relation to their multi-site study.

Anyway, I just thought I'd list some reasons to be optimistic, for the medium term.

Charles and Jonathan report good things from their meeting, and although we've been a bit sceptical, I've noticed a definite shift in attitudes the UK. I think the patient community is being heard. The message about the PACE trial, and related research, has definitely been heard. There were positive vibes coming from NICE when Charles has interacted with them. I think a shift has begun that we can build upon.

 

[A.B.]

Tobacco in relation to lung cancer and heart disease shows how far the industry can go. They knew very well that smoking kills while publicly claiming the opposite. Tobacco executives even testified in congress and denied the facts.

I have a hard time believing that Wessely and colleagues are not representing the interests of the insurance industry to which they have ties. Their position so grotesquely out of touch with reality that it's almost comical: they're asserting that medical investigation and social security payments make the disease worse.

By the way: the tobacco industry promoted psychological theories according to which the cause of heart disease were personality factors (type A personality) rather than smoking.

Further discrediting the so-called Type A Behavior Pattern (TABP), a study from 2012 – based on searching the Legacy Tobacco Documents Library – suggests the phenomenon of initially promising results followed by negative findings to be partly explained by the tobacco industry’s involvement in TABP research to undermine the scientific evidence on smoking and health. The industry’s interest in TABP lasted at least four decades until the late 1990s, involving substantial funding to key researchers encouraged to prove smoking to simply correlate with a personality type prone to coronary heart disease (CHD) and cancer.[7] Hence, until the early 1980s, the industry’s strategy consisted of suggesting the risks of smoking to be caused by psychological characteristics of individual smokers rather than tobacco products by deeming the causes of cancer to be multifactorial with stress as a key contributing factor.[8][9][10] Philip Morris (today Altria) and RJ Reynolds helped generate substantial evidence to support these claims by funding workshops and research aiming to educate about and alter TABP to reduce risks of CHD and cancer. Moreover, Philip Morris primarily funded the Meyer Friedman Institute, e.g. conducting the “crown-jewel” trial on the effectiveness of reducing TABP whose expected findings could discredit studies associating smoking with CHD and cancer but failing to control for Type A behaviour.[7]

In 1994, Friedman wrote to the US Occupational Safety and Health Administration criticising restrictions on indoor smoking to reduce CHD, claiming the evidence remained unreliable since it did not account for the significant confounder of Type A behaviour, notwithstanding the fact that by then, TABP had proven to be significant in only three of twelve studies. Though apparently unpaid for, this letter was approved by and blind-copied to Philip Morris, and Friedman (falsely) claimed to receive funding largely from the National Heart, Lung and Blood Institute.[11] When TABP finally became untenable, Philip Morris supported research on its hostility component,[12] allowing Vice President Jetson Lincoln to explain passive smoking lethality by the stress exerted on a non-smoking spouse through media claiming the smoking spouse to be slowly killing themselves.[13] When examining the most recent review on TABP and CHD in this light, the close relationship to the tobacco industry becomes evident: of thirteen etiologic studies in the review, only four reported positive findings,[14] three of which had a direct or indirect link to the industry. Also on the whole most TABP studies had no relationship to the tobacco lobby but the majority of those with positive findings did.[7] Furthermore, TABP was used as a litigation defence, similar to psychosocial stress.[15] Hence, Petticrew et al. proved the tobacco industry to have substantially helped generate the scientific controversy on TABP, contributing to the (in lay circles) enduring popularity and prejudice for Type A personality even though it has been scientifically disproven.[7]

http://en.wikipedia.org/wiki/Type_A_and_Type_B_personality_theory

 

[rosamary]

One reason why the situation for ME/CFS may change faster than we expect, is because the rate of change for scientific technology and knowledge is exponential, just like all other technology. The rate of scientific and medical progress is faster now than any time in history. Athough research dollars aren't being invested in ME/CFS specifically, money is being spent on loads of other related areas of research that may potentially have a direct impact on our illness.

Money is being invested in other areas of immunology and autoimmune illness where discoveries are being made all the time e.g. with regard to how cells function; Lab technology is transforming at a fast pace - we're always hearing of new technology being installed in labs; Immune modulators, autoimmune drugs and antivirals are continuously being developed; We're gaining more insight into autoimmunity and types of autoantibodies all the time; and insight into other diseases e.g. involving the mitochondrial and brain.

Also, other chance discoveries such as Fluge and Mella's may come about. And once we have one pharmacological treatment under our belt, then I think research should pick up pace, and funding become easier. More researchers will undoubtedly get involved. Hopefully the IOM and P2P reports will change things drastically too, but that remains just a hope at the moment.

Dr Lipkin and Dr Hornig are working on finding biomarker, and treatment, and they're even looking for a cause. They're just beginning to look at NK cells using new technology, and they seem to be doing a vast range of investigations. So something might come from their work. But there are quite a number of other high profile researchers who have recently entered the field. And people like Nancy Klimas, and partners, are doing an incredibly large amount of research. The CDC are even doing biomedical work now in relation to their multi-site study.

Anyway, I just thought I'd list some reasons to be optimistic, for the medium term.

Charles and Jonathan report good things from their meeting, and although we've been a bit sceptical, I've noticed a definite shift in attitudes the UK. I think the patient community is being heard. The message about the PACE trial, and related research, has definitely been heard. There were positive vibes coming from NICE when Charles has interacted with them. I think a shift has begun that we can build upon.

Oh, Bob! I am just looking at my wine glass! Is it half empty? Or is it half full?

Or have I had too much and can't see clearly?

You make some good points. It is just very difficult to let years of anger and disgust subside.

Also, knowing that it will take YEARS for this to be sorted out when YEARS have been wasted.

But I will choose the optimistic attitude...

But the deep rooted justifiable anger inside will remain.

 

[Bob]

Telling a patient that there's no cure and no effective treatment doesn't equate to being told that there is no hope for improvement, and no way to manage the illness.

From what I've read, it's common for young people to experience improvements over time, after a period of ME-like symptoms. And the outlook is undoubtedly best with good management of the illness i.e. managing symptoms by pacing and making adjustments to life style etc. And help can be offered to reduce the impact of the illness, in various ways.

I think hope is needed for all patients, and I wouldn't ever want to deny anyone hope. But also, we all need accurate and honest information. Misleading or false information is disempowering and can be dangerous.

 

[Aurator]

I don't know whether it's been quoted on PR already* but Lucinda Bateman has this to say in answer to the questions "Why is there so little research into CFS-ME? Why don’t we get respect?":

"Although lack of respect has certainly played an important role in the slow progress of ME/CFS research, the full story is more complex. Research funding is based on promising hypotheses and well-designed studies that show convincing objective results, along with institutional biases, pharmaceutical pressures, the track record of each investigator and numerous other factors. Good results are more likely when we can clearly define the problem at hand and come up with reliable ways to measure it.

This field has been mired down with so many problems--- unclear or overlapping case definitions, small uncontrolled studies with mixed or un-replicated results, and the lack of a medical and scientific “home” are just a few.

Regardless of the frustrating problems so far, I predict that the research environment will change fairly quickly over the next few years due to intense discussion of case definitions, promising new biomarkers, the voices of public advocates and efforts by federal institutions to change old stereotypes."

*It has in part, courtesy of Oceiv.

 

[Sean]

Charles and Jonathan report good things from their meeting, and although we've been a bit sceptical, I've noticed a definite shift in attitudes the UK. I think the patient community is being heard. The message about the PACE trial, and related research, has definitely been heard. There were positive vibes coming from NICE when Charles has interacted with them. I think a shift has begun that we can build upon.

I get the distinct impression that the ground has quietly but firmly shifted in the last 3-4 years, and we are only now starting to see the practical consequences coming to the fore.

 

[taniaaust1]

I like him best!

Is it just me or does it seem that lately, these sort of things never turn out half as bad as we expect them to? A sign of the times maybe? Certainly a sign of some people's waning influence.

This IOM report could of ended up real bad.. the fact that all the uk speakers except one spoke about it shows how powerful the influence of the IOM report is.. if this report had been badly done we would of been screwed the world over. If we hadn't been in the age of computers we probably would of been screwed. I think ME/CFS patients watching over this whole process helped to keep some of the biased which may of otherwise occurred out.

I think the fact that Wesselly has got old has helped, he's not constantly churning out biased studies any more or writing about some same study but in a way that one thinks its a different one. It used to be like he had a constant impact on things, always making some headline or another. His biased influence is waning.

Maybe Dr Charles Shepherd deserves a knighthood!! He's fought for those who have ME for lots of years against the biased Wessely influence which had a hold on medical professionals, governments etc.

 

[taniaaust1]

I know I am guilty of over generalising from experience of the Bath paediatric ME service where they basically run a graded activity program. They too tend not to mention exercise. They promise 97% success but remove patients that they feel aren't following their programme (i.e. aren't getting better) and I was told that 'my child couldn't have CFS/ME since she had been ill for too long. She had CFS/ME (since their original diagnosis must be right) and they had cured that with their activity management program (consisting of a leaflet and an occasional phone call) despite no symptom change. But I was then told my child who was pretty much bed bound at the time must have been suffering from a dissociative disorder from the stress of being ill. I must say I wasn't surprised as I had heard that the clinic took that approach.

Thanks for this post as I think it helps once again to show why all ME/CFS trials should have evidence based provable outcomes that people have recovered from ME/CFS and for it not to be based on the word of anyone, be it dr on the just the patient themselves without evidence of this being so.

Why cant there be a medical standard made for ME/CFS research trials?? Is there anyway we could get standards put into those who do our research???

 

[taniaaust1]

I think there's an institutionalized attitude which would remain. Even if some new people come on board, the old experienced "experts" still around are going to be seen as an authority. And then their nasty attitude just gets passed on to the new clinicians, unless they're already very well-informed regarding biological research.

I really think they need to go. A fresh start gets a complete break from the old attitudes.

I personally do think we should be pushing for ME clinics but they really need to be started up with the right frame work and team of specialists with a social worker, rheumatologist, gastroenterologist, immunologist, allergist, nutritionist/dietitian, sleep specialist (is that a specialist field?), a psychologist (just like any other serious, not easily treatable illness a patient may need one), a dr specialising in autonomic issues for POTS and BP issues, an endocrinologist and a general doctor that patients to that clinic can see before being refered to whatever else they need there.

There needs to be a minimum of 10 different specialities involved to deal with ME people well. Any ME clinic with less then all these specialists just would not be a good clinic for us. They need to get rid of "fatigue" clinics as this illness just isn't mostly about fatigue and that's just offensive. Clinics also should have to have an outreach service for those housebound and bedbound.

I personally think the ME patient group understands well what is needed at this point of time health wise for us with where things currently stand now and its a pity our governments don't. sure we cant currently be cured but we certainly can be medically helped. Those with diabetes or whatever aren't "cured" either but it doesn't stop their being diabetes clinics or them being able to go and get the best help them can be given.

 

[taniaaust1]

There wasn't any real discussion on diet and dietary intervention. There was a short discussion on the role of trace elements, vitamins, supplements (magnesium in particular) following on from two questions at the end - one of which came from someone who I think was some form of nutritional therapist who wanted to see research into the efficacy of these type of interventions.

I think the diet side of ME issues certainly cops the short end of the stick with near no attention put onto it. why so much attention on fatigue and near nil on diet issues with this? . has any diet with ME studies even been done??? (oh I remember one, it was on issues with fructose).

It's quite irronic when a huge percent of ME patients develop dietary issues with this illness. We don't even know the percent due to lack of studies. Finding any foods ME patient is negatively responding too can be quite important in helping symptoms

eg I was getting a daily headache due to dairy products for several years. umm maybe one of us should set up a survey here to ask how many have found dietary issues with the ME (but the number who says yes would only be a sample of the percent who have this, many wouldn't have worked it out yet. I know it took me years to realise I had food issues with the ME. I don't know at what point of this they started but I certainly didn't have them before ME.

I think the food issues came in just before ..a year before? or maybe when the MCS symptom started..

 

[taniaaust1]

I think there probably is room for optimism, but we've seen so much dishonesty that we're cynical and we've learned not to take things at face value.

Hopefully there is progress, but please don't accept the use of language at face value. We're all far too familiar with how clever language can persuade the government and health authorities that ME patients just need a pat on the head.

@Jonathan Edwards I agree with Bob, there is room for optimism. Issue is the whole ME/CFS community has been overly optimistic on so many occasions only to later find out we were being too hopeful that we no longer trust things esp those who have been around this whole ME field a long time and been sick long term, have experienced this a lot. It's horrible getting ones hopes up that something is about to change, to only have the real truth later slam down.

It's probably a big protective thing going on at this point (many of us generally are not pessimistic people though this situation may make us look that way), we just do not want to be let down again and talk is cheap as that saying goes. Fool me once, fool me twice maybe but to fool me the third time that would make me the fool. Guards are all up (making ME patients often appear prickly to be dealing with).

We'll believe things are changing when we truly see it happening. Those who have play the cards of saying one thing they don't really mean (being deceitful) has caused a huge sense of mistrust of most of the ME community towards health professionals.

I had a dr who lead me on for 2-3 years, "making out" he was being supportive (while behind my back he didn't pass on any of my CFS specialists messages on what he wanted me to do and he thought my GP was telling me). I ended up feeling abandoned by my CFS specialist as I thought he was doing nothing more and thought there was nothing the GP could do except be nice to me, I had my trust in this dr.

One day had a terrible collapse while trying to get home from drs, staggering before that but no-one would help as they thought I was drunk, I ended up in a gutter, cold, sick and unable to get home (I cant express how horrific that situation was). Next time I was at my drs I told him about this, still very upset about it.. his reply was very blunt and just several words "You aren't disabled" "You aren't even ill" (note, this was said though I'd been on a disability pension for several years, this dr could of ended up causing me to loose my pension so Im lucky I found out before I was up for a review).

He'd just made out he was sympathetic to CFS while he sent me to psych after psych after psych trying to get me diagnosed with mental health issues even though first ones told him I was fine.. in the end who didn't believe in CFS one said I had BPD so he caused me to get a false mental health diagnoses which I cant seem to get off my medical records so affects things when I see a new dr).

It was only when I stopped seeing this dr when he made the comment about me not even being ill, did I find out that he had ignored all my CFS specialists advice my specialist thought he'd been telling me. (I never found out exactly what it was either as by that point my specialist was no longer seeing patients as he'd had a stroke and could no longer consult).

What we've experienced and seen go on around ME errodes trust in drs to the point that none are trusted any more in blind faith. Many of us will find it hard to trust doctors for the rest of our lives.

 

[taniaaust1]

There was a sense at the meeting that everyone was very aware that they needed to justify what they were saying - a more self-critical atmosphere than often at medical meetings. At least up until now that must reflect patient pressure.

That's great to hear and certainly something many of us need to hear. thanks

 

[taniaaust1]

I do not know if there is any stipulation on which service ME/CFS comes under. The clinicians I know are in departments of immunology, medicine and paediatrics and that seems fine to me. I don't think community services should be separate from hospital services. I think we should go back to the days when home visits were done by professionals with special expertise based in hospital units. One possibly positive aspect of the current 'choice' obsession is that if an immunologist set up an ME/CFS clinic and managed to provide good care without having to employ a psychologist then they might draw business from a department down the road. I am not directly enough involved with care to say anything very sensible though.

from my own experience, all specialists dealing with a severe ME patients care really do need to understand this illness some or the ME person runs into problems with specialist (or has to keep some aspects of the illness which may of been relevant to themselves, to not go and rock some boat). ME patients often need a team of different specialists...for many an immunologist just isn't enough. (Ive been under 11 different specialists at a time as my ME issues are quite extensive).

Cause I have so many specialists when I can get to them involved in my care, things in my case are a mess and no one knows what others are doing.. and even when I end up in hospital, the hospital cant send the report to all my relevant specialists (I find they'll send it to 2 at the very most if that eg my GP and maybe one specialist). I then got hit with another specialist not believing how sick I are and don't even believe I was in hospital yet again as "if you were the hospital they would of sent me something".

Having specialists all over the place, there is no good communication at all between most of my doctors which makes my whole case a big mess as not one dr is able to keep up with what is going on (my last two GPs tried but found it impossible, Ive had GPs tell me I shouldn't be under a GP general practitioner at all as they think a specialist should be managing things but individual specialists all thing a GP should).

I go to one doctor and they do a heap of tests, I go to another dr and they go and do same tests thou I say they've already been done not long ago). A ME clinic would fix all the communication issues I have between specialists (sometimes they even give opposite advice!) and hospitals and doctors.

Ive just found out that a nutritionist who didn't believe in ME/CFS (she told me it was fixable by not watching TV) is a little bit responsible for me not getting disability services I need for home support which has caused me major issues almost daily for past 2 years. This nutritionist put in her nutrition report that I can cook when I cant even usually cook as I cant stand long as I collapse and end up in hospital.

I was once injured by a physio who obviously didn't believe I'd spend most of 9mths bedbound before seeing her, I injured myself first repetition I did of the first exercise she gave me to do, tore something at her very first exercise. I did tell her I needed a very very easy exercise program to try to strengthen my muscles after long term bedbound but she obviously didn't get that.

Then I recently spoke to what was going to be a psych for some counselling due to all the issues Im having around the issues ME is giving me, only for her to say things to me which showed she has not a clue about this illness and that she'd be a bad psych for me to counsel on this aspect of things. Talking to her on phone made me feel worst.

ALL our specialists NEED to be ME knowledgable or it can cause some major problems be it a specialist not understanding this illness may end up getting someone declined for disability pension or whatever or like my case where a nutritionist was at least partly the cause of (maybe the full cause??) of me not being able to access the disability services I need cause of a comment in a report due to her lack of knowledge and of her thinking ME is a mental health illness and not a physical thing.

Ive ended up having to take things to court over the discrimination of the disability services and her report saying she'd made me a meal plan and that I can cook..when in fact I often cant, most nights I cant.. probably helped influence their thinking towards me which has resulted in the court case). Doctors and specialists who do not understand ME can be quite harmful to our lives.

It doesn't matter if we have understanding doctors also backing us as many gov depts. will look at the report saying you can do something rather then the doctors who are saying you cant (as in what has happened in my case). We need ME clinics were all the doctors/specialists there understand ME.

 

[taniaaust1]

I also agree that the cultural shift will come about as soon as pharmacological treatments are discovered.

Sadly I have my doubts that we will get good pharmacological treatments until its got to the point in which they can study using subgroups... and right now the IOM couldn't even come up with subgroups. I think unless they stumble across a phama answer for it, I think treatment may be a long way away.

The current phama treatment we need may not even exist yet but may be something they create once they
1/ figure out the subgroups so they can finally do decent research
2/ work out what causes this illness..

and then we may have to wait for them to come up with a suitable med. I hope Im not right about this as if all that has to occur we may still have a very long wait.

 

[taniaaust1]

I know of patients who had home help services supplied, but I am not sure who did that. However it turns out that the help consists of helping you to do more. CBT/GET in disguise. This has led patients to become afraid of the "help" they are offered.

That's the situation Im put into here in Sth Australia with my states disability service and I know its happening to UK people too. Im expected to be helping my home support workers, most of the time Ive ended up in hospital is due to this.

In my case thou its isn't due to them doing CBT or GET in disguise (umm I could be wrong though if that is a secret intent of theirs) but from what they've said its cause they will only give me home support for Aspergers and not ME.

 

[MeSci]

I understand your concern about this. But the fact that there is as yet no proven treatment that the NHS (assuming you're in the UK, given that you're a mum and not a mom!) can offer doesn't mean that there's no helpful treatment that you might try to find on your own (the position that most of us here are in), or that some spontaneous improvement might not gradually occur (especially at 16 rather than when older).

As a patient, it's important not to be lied to, especially when the treatment that people are lying to you about (GET) can be extremely harmful.

I think it's similar to lying/not lying to a child whose parent has a terminal illness. If you are not honest and open about what the parent has, then even if you tell the child repeatedly that the illness is terminal, a resourceful and independent-minded child will keep trying to find out about the prospects of surviving the illnesses you have used to cover up the scary truth.

For example, I was told that my mother with terminal cancer had a range of diseases, when in truth these were only the complications, and on their own they were all potentially survivable. Cancer was never mentioned. So I refused to accept that death was inevitable. (This was in the days when cancer was a death sentence.)

When death came, it was much harder to cope with than if I had had time to understand and prepare.

I have been harmed a lot more by lies and omissions than by the truth.

 

[Snow Leopard]

There is only one way forward and that is for the relevant researchers to sit down yet again and write applications yet again and hope that this time something will hit the right button. They will do that and from time to time they will succeed.

The problem is that there is a vicious cycle in ME/CFS - there are no key central findings to build upon, so even in the absence of preconceived biases on the part of grant reviewers, it is generally going to be very hard to convince them that it isn't just another fishing expedition.

I personally, think that given the lack of success, it would be prudent to do less conventional/slightly more speculative studies. The Lipkin microbiome study is a perfect example. Given that most patients also have food sensitivities (eg I tested positive for a hydrogen breath test for lactose), there almost certainly will be some novel differences in the microbiome. Whether this research could uncover a central factor that explains the disease is another question...

In the UK and Australia there are specific disease groups which are targeted/prioritised in terms of research - perhaps it is just promotion, but either way those targeted areas have grown substantially in terms of research funding since the policies were implemented. The stated purpose of prioritisation in a research context is that there was insufficient 'research capacity' and that targeting was required to build that capacity, to encourage more researchers to direct their careers towards that area for example.

We can talk about "creative grant accounting", which is sadly what most researchers have to do do, since it is so hard to get funding for pilot studies. But all this means is that there is often little money left over for speculative ME/CFS studies, so most of the time they are left in the too hard basket. Of those pilot studies that we do see published, they tend to have sample sizes that are too small, not enough depth of investigation, or just of poor quality in general.

Apart from that, it is typically private charities who fund pilot studies - and we have seen that in ME/CFS too. With the CAA (led by Vernon, who does a great job, despite some criticism in the community...), UK charities, the Mason & Harold Stannett Williams Memorial Foundation in Australia etc.

Without these charities, there would be almost no biomedical research done on ME/CFS.

 

[Bob]

Sadly I have my doubts that we will get good pharmacological treatments until its got to the point in which they can study using subgroups... and right now the IOM couldn't even come up with subgroups. I think unless they stumble across a phama answer for it, I think treatment may be a long way away.

Yes, i agree that subgroups will probably prove to be important. But subgroups can be defined by the patients who respond to any treatments that are tested. Fluge and Mella are uncovering subgroups; The next step for them is to see if they can define which of their patients respond to rituximab, and then they can provide rituximab only to the specific patients who they know will respond. So, subgroups can be defined by treatments.