PACE Trial’s Forbidden Fruits: The Fruit of Your Labour


food-healthy-man-personIn the most recent post in this series I encouraged ME/CFS patients to contact UK charities and ask them to write open letters to Queen Mary University of London (QMUL) calling on them to release anonymized data from the PACE trial. Despite QMUL’s absurd stance on sharing data from the PACE trial, they had stated that they were seeking “patient advice” on the matter so I was sure they would welcome contact from charities that are in direct contact with patients. Perhaps as a result they will finally realise their stance is causing harm to science and distress to patients. They should drop their appeal of the Information Commissioner’s decision that the data must be released.

The response from readers was incredible with lots of patients joining the effort. Results have been dramatic with eight UK charities taking action so far!

  • ME Association: has written to QMUL in support of the FOI request which the university are appealing. A copy of that letter can be viewed on their website.
  • 25% ME Group: have written a letter (Word doc) to QMUL asking them to arrange release of the PACE trial data following the requests of patients and academics. They also raise concerns about harms experienced by their members from the PACE therapies.
  • Action for ME: published a statement that they strongly support the release of anonymised data from the PACE trial and will be writing a letter to QMUL that they will make public. Additionally, all future research funded by AfME will obligate researchers to share anonymised raw data.
  • Hope 4 ME & Fibro NI: has written to QMUL in support of the other requests for the anonymized PACE trial data to be released. A copy of their letter on their Facebook page.
  • Invest in ME: has written to the both the medical research council and the Lancet demanding that the data be released. Their statement and letters can be read on their website.
  • Tymes Trust: has written to QMUL asking them to reconsider their decision to fight the Information Commissioner’s decision that the data be released. Particularly in light of the risks to children being asked to take part in the PACE-for-children study (MAGENTA). Read a copy of the letter on their Facebook page.
  • Welsh Association of ME & CFS Support: has written to QMUL asking them to release the data and cooperate with a truly independant investigation, urging them not to delay and face up to the inevitable. Copy of letter on their website.
  • ME Research UK: has written to QMUL recommending they release the anonymised data and highlighting PACE trial’s controversial history and the movement in science toward accessibility of data. Their statement can be read on their website.

Outside of the UK

The Dutch Citizen’s Initiative for ME are the first (I hope of many) organizations outside the UK to join the UK charities in speaking up for patients in their country by writing to QMUL (and the Lancet) calling on them to release the anonymized trial data and carry out an independent review of the findings. You can read their letter here on their Facebook.

The Irish ME Trust have written to QMUL calling on them to urgently reconsider their position and release the anonymous PACE trial data. You can read their open letter here (dropbox).

Two belgian organizations, and WUCB (Wake up call beweging) have come forward to demand release of the PACE data, writing to both QMUL and the Lancet, calling on them both to realize that they can no longer defend the indefensible. Read the letter on their website.

Phoenix Rising, a US-based non-profit with membership representing much of the world has written to QMUL: release the PACE trial data.

The European ME Alliance (EMEA), an organisation of a dozen national patient organisations and charities in thirteen European countries campaigning for better research into the disease have written to QMUL urging them to reverse their totally unacceptable position and release the anonymous PACE trial data. You can read their letter here.

Their website lists 12 organizations, but I think one or two may be missing from the website. Here are the ones listed and I will update this if anyone is able to inform me of any that are missing.

1. Belgium ME/CFS Association (Nieuwrode, Belgium)
2. Foreningen for Myalgisk Encefalomyelitis (Denmark)
3. The Finnish Association of CFS (Finland)
4. Fatigatio e.V. (Germany)
5. Het Alternatief (Holland)
6. Icelandic ME Association (Iceland)
7. The Irish ME Trust (Ireland)
8. Norges ME-forening (Norway)
9. Liga SFC (Spain)
10. Riksföreningen för ME-patienter (RME) (Sweden)
11. Verein ME/CFS Schweiz (Switzerland)
12. Invest in ME (UK)

Three more Dutch me/cfs organizations ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid have written to QMUL to release the PACE trial data. You can read their joint letter here.

Emerge Australia have written to QMUL and you can read their letter here.

ME/CFS Australia (SA) have written to QMUL. Here is their letter.

That makes twenty-nine patient organizations so far, from fifteen (I think) different countries. It is a global issue so if you are impacted by PACE in your country then I encourage you to speak to your national patient representing organizations and ask them to join the action.

This is a massive blow to QMUL’s war on transparency and avoidance of scientific accountability. We know that QMUL had contacted selected charities in the hope of securing their support, but have been rejected. Instead, charities are sticking up for the patients, and standing up for better science. They are doing the right thing and they deserve credit for that. It’s a sign of progress. Don’t forget to thank them for listening to us.

The one UK charity who failed to stand up for patients, ignoring us for weeks before making a worrying interim statement, was the Association of Young People with ME. You can read by open letter to them here and I suggest patients in the UK contact them to make sure they understand what patients expect from them. They hold their board meeting in March at which point a final position will be reached.

A charity must be judged by its fruits; their actions  not their name or friendly looking logo. If you are a supporter of AYME then unless they promptly resolve this situation you may wish to reassess whether AYME deserve that support. Consider if one of the charities listed above would represent your interests better. Although one charity may let us down, we won’t let one rotten apple spoil the barrel; bad fruit belongs in the bin. The many charities above listened to you, they acted in your interests and you made that happen by communicating with them. Now you get to enjoy the fruit of your labour. Enjoy the win, get a taste for more.

The success of this action has also attracted the interest of other non-profits outside the UK whose members are just as unequivocal that the PACE data must be released. I consider this action a success already in the UK, but I hope more organizations outside the UK step up for patients and join the action.

What this win demonstrates is that patients in the UK and all over the world can make a difference. We all know there are hundreds of thousands of us in the UK and millions across the world. It is time to start utilizing our numbers. When I first got sick in 2008 the community had big divisions, but worse than that, no one believed we could make our voices heard, even on topics where there was agreement. That situation has changed over the last year or so.

I have seen more and more patients join social media, understanding that it is a powerful platform where we can make our voices heard from our beds, from our small communities. The charities have become more effective, working on their wording, focusing tighter on the major issues, and putting patient interests above other loyalties. In addition there are new groups like the ME Action Network who help organize people to campaign more effectively.

No longer are good petitions signed by just a handful of patients. No longer do only two or three patients respond to a well conceived campaign to contact agencies or charities. Taking action, spending that limited energy we have on trusted campaigns now pays off because collectively our voices are too loud to ignore. It is the single most important advantage that we have as patients with this disease: there are so many of us that if we get organized, if we take part and believe we can make a difference, then we cannot be ignored.

If you took part in this action – contacting the charities, sharing and discussing the campaign on social media, or telling family and friends about it – then well done. If you didn’t, then that may be because you didn’t know if it would bring results. If so, I understand why. But things have changed, and this result is evidence of that. We can make a difference. If you take anything away from this win, let it be that: You can make a difference if you take action.


Small update regarding AYME: They have now tweeted (see below) asking patients to contact them about their stance on the PACE trial. The address they quote is the same one I used previously. Nevertheless, I would encourage patients to contact them as requested asking them to support patients by calling on QMUL to release the PACE trial data. You can find a template message in my previous blog post, or you can write your own.


main image: creative commons zero license, from Pexels

PACE Trial’s Forbidden Fruit, Part 3: Charities Must Echo Patient Calls For Data Release


I recently wrote about the Freedom of Information (FOI) request that the Information Commissioner upheld, ordering Queen Mary University of London (QMUL) to release the data requested from the PACE trial. I provided an example of exactly what data was requested to demonstrate that the release would not include any personal identifiers of patients from the trial. I also highlighted the scaremongering of the PACE authors and their institutions that is misleading people into thinking the data is personal data when it is not. Before that, I wrote about why we must be allowed to see the data.

QMUL released a statement about the case, stating that they were seeking advice of patients, but they have not explained how this advice is going to be sought or under what conditions.

Many ME/CFS patients will obviously want to have their opinions taken into account. It is clearly a matter that patients feel strongly about. A recent petition concerning the PACE trial, signed by over 11,000 people (mostly, it is reasonable to assume, patients) included a call for:

“the study authors… to give independent researchers full access to the raw data (anonymised by removing trial identifiers and all other data superfluous to the calculation, such as age, sex or location)”

My suspicion is that QMUL and the PACE authors will seek the support of ME/CFS charities who have supported them in the past. But our charities should neither support the withholding of the data nor passively wait to be contacted: they should be all over this issue. Patients rightly expect the charities to speak up on their behalf, to earn the donations and membership fees we give them. The charities must ensure that the PACE authors can’t just cherry-pick the advice from patients that suits them.

Previously, some of the charities have done a good job of challenging the flaws in the PACE trial and others have fallen short. Some past statements suggest that some ME/CFS charities may not understand the problems with the trial. However, this is too important for the charities to fail to inform themselves of all the facts. There is now plenty of well written information about the problems with PACE. Whereas patients may be too sick to do the necessary reading and thinking, our charities have a duty to study the facts. They must not allow themselves to be be misled by the PACE authors or sit on the fence through ignorance; either will be unacceptable to patients, who will not forgive such a failure on this key topic. Charities representing patients, particularly, but not exclusively in the UK, can have an important impact and I am calling on them to stand up for patients on this crucial issue.


I encourage readers to contact ME/CFS charities and ask them to contact QMUL to tell them that patients want the data released. Crucially, not just the charities that have been supportive of patients already but also those that some may feel have let them down on this issue before. Judge each charity by its subsequent actions. Below are the contact details of a list of the larger UK charities which you may wish to contact.

I will be writing to ME/CFS charities who represent UK patients in two week’s time to ask what their official stance is, and what they are doing about it. I hope that they will publish their letters to QMUL on their own websites so that I can link to it. If you also want to post a copy of your email/letter/the gist of your phone-call, then feel free to do that here – I think it would be good to have the views of patients on the public record.

Here is what I will be sending to each of the below charities. Feel free to copy the text – adapting it if you like – to save yourself some time.

I believe this is really important. We have limited energy, but if we don’t spend it to do this then QMUL will find it easier to present a one-sided view of what patients want that will not represent us well.

My email:

I am writing, as an ME/CFS patient/member of your charity, to express my concern about the PACE trial and Queen Mary University of London’s (QMUL’s) actions to deny release of trial data that the Information Commissioner has ordered them to release. I understand that QMUL are seeking the “advice of patients” which I assume may include contacting you for a statement or evidence of what patients’ advice on the matter is. Even if they do not contact you I think you should contact them so that patients’ views are accurately conveyed.

Patients’ views have been expressed in an 11,000-signature petition hosted by the ME patient-advocacy organisation #MEAction, which included a call for “the study authors… to give independent researchers full access to the raw data (anonymised by removing trial identifiers and all other data superfluous to the calculation, such as age, sex or location)”.

I believe that it is crucial that our UK ME/CFS charities stand up for patients and for transparency in the science that affects our lives: patients expect no less of our charities at this crucial time. The Information Commissioner has already concluded in his ruling that the data release poses no risk to trial patients being identified.

In common with the petition signatories, my view is that the PACE trial was flawed and the de-identified data must be released to the public at once. I believe QMUL should drop their appeal before the tribunal hearing and comply with the Information Commissioner’s decision. I hope that you will contact QMUL and express to them that this is a widely held view among patients, and one that you support.

I hope that you will post any letter that you send to QMUL on your website. I have written a blog post on this topic and will link to any public statements that you make on this issue.


Contact details for the larger UK ME/CFS charities:

The charities are listed in alphabetical order. While some informed themselves early about the problems with PACE and have, to their great credit, actively campaigned to protect patients from the misinformation that surrounds it, others have not. The latter charities in particular now need to realise that they must act in a way that reflects reality and patients’ needs before they lose their reputations for good: and all charities now need to come together and speak with one voice. Please write and tell them!

Action for ME
Invest in ME
ME Association
ME Research UK
Tymes Trust

25% ME Group (added to list 09 Feb 2016)




PACE Trial’s Forbidden Fruit: Is The Data Really Poisonous?


A Mock strawberry: No it’s not poisonous, despite what you may have heard. Just tasteless.

A freedom of information (FOI) request was submitted to Queen Mary University London (QMUL) in 2014 for a small portion of the PACE trial data (below I go into detail about precisely what data has been requested, and you can skip ahead if you want to). QMUL refused this request. The case went to the ICO who agreed with the requester and ordered QMUL to release the data. QMUL have appealed this decision and the tribunal will take place in 2016 with the court deciding whether QMUL have to release the data, or not. The outcome is impossible to predict, but it’s important. I wrote previously about why we must be allowed to see the data.

Here is my opinion: For ME/CFS, this tribunal case is one of the most important things that will happen in the whole of 2016. It’s outcome will affect millions of us for years to come. So I consider this important. Very important.

I’m not sure all ME/CFS patients realise how much PACE affects their lives. PACE is the cornerstone of the behavioural model that dominates how ME/CFS is perceived by government agencies including the NHS, the media and the public. It dominates how the disease is treated, not only in the UK but in many other countries around the world. It dominates how research money is spent (more behavioural studies rather than biomedical studies that might actually lead somewhere). It dominates social security policy that ultimately affects whether you get the support you need to live when you are crippled by the disease.

If you think that as PACE was studying those diagnosed with the Oxford criteria and therefore it doesn’t affect you, think again. The authors use the term myalgic encephalomyelitis in their protocol, their paper, and media statements, alongside chronic fatigue syndrome, and this important limitation to the study (uselessly broad criteria that mean people with other diseases are included in the study) has not held it back from being used to blight the lives of those with ME or CFS defined by a stricter set of criteria. So this matters to all of us no matter what we think of the names, or whether more than one disease is represented by these labels.

The study has been fraught with problems, the design was a shocker, there have been concerns over safety, reporting of results and misrepresentation of data, and the hiding of data that does not support the authors pet-theory of a behavioural model of disease. Without visibility of the data the authors conclusions cannot be put to test and undergo normal scientific scrutiny. So it is essential that we get to see the de-identified data.

In relation to this case, QMUL have said that they are “seeking….advice of patients…” No details are given of how QMUL is seeking this advice of patients. We have not been told how patients are being selected, how QMUL are presenting their request and what information they are providing the patients with, or how patients wanting to provide advice (me, for instance) can do so. This concerns me greatly as the authors of the PACE trial have repeatedly attempted to set themselves up as an unofficial mouthpiece for patients; they tell government agencies and the public what we apparently want and think, they have huge influence in this area, and yet none of them, to my knowledge actually formally represent any patient organizations – and given their research positions it would be inappropriate if they did. These are researchers who give treatment in clinics and in trials to patients. They do not formally speak for patients. And it’s just as well, as they make all kinds of statements without foundation:

QMUL and the PACE authors have repeatedly misled and propogated misinformation with regard to FOI requests for data from the trial, painting a picture of requesters are harassers and of individual patient’s personal data being at risk (click here for a list of examples that I have just started putting together – please leave a comment there if you have spotted others), but this is nothing more than a tactic designed to avoid transparency. Even if we trusted them to follow a transparent and appropriate process when contacting patients for advice, the statements they have already made are highly likely to have biased much of that patient feedback already.

I think it essential to ensure everyone knows exactly what data was requested. These are the data points, below – and only this data – that will be released should the tribunal reject QMUL’s appeal.

• Total SF-36 physical function scores at baseline and 52 weeks. Patients filled in a 10-item questionnaire and their answers were summed to give a total score between 0 and 100 points: it’s this total score that has been requested.

• Total Chalder Fatigue Questionnaire Likert scores at baseline and 52 weeks. Patients filled in an 11-item questionnaire and ‘Likert’ scoring yields a total score between 0 and 33 points.

• Total Chalder Fatigue Questionnaire bimodal scores at baseline and 52 weeks. The “bimodal” method of scoring this questionnaire yields a total score between 0 and 11 points.

• Whether the participant met the Oxford definition of CFS at 52 weeks (yes/no).

• Participant-rated Clinical Global Impression score. This is a rating from 1 to 7 of how the participant saw their health as having changed at 52 weeks, ranging from “very much worse” (7) to “very much better” (1).

• Doctor-rated Clinical Global Impression scores. As above, but rated by the doctor, not the patient.

• Meters walked in six minutes (the “six-minute walking test“) at baseline and 52 weeks.

• The group to which each participant was randomly allocated (i.e. APT, CBT, GET, or SMC).

As you can see, the data being talked about contains no personal information whatsoever. Personal details of participants such as name, gender, age, locality, will NOT be disclosed.

For more detail on these questionnaires, HERE is an excellent detailed explanation

A spreadsheet containing only the above data would be released. Here is a made up example of what a few rows of that data might look like with each row being the de-identified results from each patient:


Click here for a larger image in a new window. As you can see this is data is handy if you want to analyse whether or not the PACE treatments were as effective as its authors claimed, it is entirely useless if you wanted to track down the patients from the trial (not that there is any evidence anyone would want to do that anyway).

If you have read, or been told, that the data is more than this, then you have been lied to. If you have been told that patients who took part in the trial can be identified from this information then you have also been lied to. It is patently ridiculous to suggest that anyone could be identified from this set of data, as there are no personal details whatsoever. With over 600 patients having taken part in the trial there is simply no way to pick anybody out, even if someone knew who had been in the PACE trial; and with over 250,000 CFS patients in the UK, there’s no way of picking out PACE trial patients with the sort of data that has been requested.

Something QMUL and the PACE authors have never explained is why anyone would want to identify and track down the patients from the trial. Without a suggested motive, it’s hard to see why the PACE data should be higher out of reach than other studies which release their de-identified data (quickly becoming the norm nowadays). What has been the experience of patients from the PACE trial who have chosen to reveal that they took part in the trial, I wonder?

I have seen several patients who took part in the PACE trials say so on social media and I have never seen anyone respond negatively at all. Rather, I have seen fellow patients thank them for taking part in research, I have seen fellow patients offer support if they are still sick, and I have seen fellow patients respect their privacy unless they want to talk about it more. The most common response I have seen is a “Like” on Facebook with many patients from the PACE trial who reported their participation getting double figure “Likes”. We are all patients who share this diabolical disease, and I think it is very unethical of the PACE authors to manufacture the illusion of some kind of wedge between us when there is not one.

To reinforce the point that the release of the PACE trial data would not lead to any patients being harassed, I want to remind everyone that the PACE trial had a sister trial called FINE that was conducted at the same time. Whereas the PACE trial was for mild to moderate patients, the FINE trial was intended for severe patients and those who could not get to their local ME/CFS clinic due to distance, but similar data was collected. The FINE trial failed just as badly as the PACE trial did, but unlike the PACE trial, the authors of FINE, to their credit, released several pieces of data equivalent the  data requested of PACE. In fact they released a whole bunch of other de-identified fields as well, and did so without even being asked and anyone can go access it without any problems. No patients who participated in the FINE trial have been identified, no one has even tried. What would possibly be the motive to do so? I’ve noticed that QMUL and the PACE authors sometimes like to say things which lack any logical foundation to justify them, and that seems to reflect their overall effort to simply hide the PACE study from scrutiny at all costs.

I hope patients, including those who took part in the study, are not fooled by this scaremongering, but I understand some will be. It is not their fault if they are, they should be able to trust the people running the trial, but clearly if you question what they are saying you can see they are misleading patients. I hope this article adds a little clarity to what data is really being asked for and leads people to think about the true motives behind QMUL’s extreme attempts to deny release of the annonymized trial data.  If you want to follow this topic as it progresses over the coming months I suggest following James Coyne, David Tuller, and myself and keeping an eye on our blogs.

Within the next week I will be publishing another blog post focusing on how ME/CFS charities are responding to the PACE trial scandal and this specific appeal case, and what patients might be able to do to ensure their views are heard.


PACE Trial’s Forbidden Fruit: Why We Must Be Allowed A Look Inside

Take my word for it, it's an apple...

Take my word for it, it’s an apple…

If you have any interest in science, open data, bioethics, freedom of information or ME/CFS then the rejection by King’s College London of Professor James Coyne’s request for data relating to their PACE trial will not have escaped your notice. Indeed, many in the science community seem to have noticed ME/CFS for the first time as a direct result, as some of the tweets later in this article may suggest.

First, do take a look at the letter from KCL. It’s short on pages, and long in absurd statements.

The university focused a lot on the damage to reputation and potential criticism of the authors, however if the data is sound, if it supports their assertions about PACE as they have published then there should be no anxiety over this whatsoever. Indeed, if the authors scientific method is sound then release of the data would vindicate them, and would surely enhance their reputations. If the serious allegation of “improper motives” as they put it, has any validity be it by those who wish for openness or those arguing for concealment, the only way to determine this is to release the data. At present we have a claim the evidence is compelling but a contradictory argument that it must be accepted in blind faith. The brief glimpses we have been allowed so far have already shown that the PACE authors have repeatedly misrepresented PACE by telling everyone it is an apple when it is not. When is an apple not an apple? When it is an orange. 

First there was the ‘recovery’ paper where they redefined the word recovery to mean someone who is still so disabled at the end of the trial (average age, 38) that they are on a par with those suffering from Class II heart failure, and may even be worse off at the end of the study than when they started. Recovery to the authors means someone who has scored only 60 out of 100 on a physical function score, even though you could enter the study with a better physical function of 65. (Yep, you could actually get worse in this study according to the trial’s two primary outcomes and they would still count you as recovered – a success).  See David Tuller’s blog for more on this.

Then they claimed follow up showed CBT and GET were effective when in fact the underlying data showed a null result. No more effective than standard medical care. See James Coyne’s blog for more on this.

Now they are labelling legitimate request for data as vexatious, of no value, as having improper motives. They will say anything to avoid releasing the data. They want you to see an apple when in fact it is an orange. And from a distance it may really look like an apple. If you only look at the title of their paper and don’t read it objectively you can easily be fooled. But what they don’t want you to do, what they can’t allow you to do, is bite into the apple. If you do so you will discover that it’s not an apple at all. It is an orange. It was always an orange. They consider PACE to be a forbidden fruit; you may only look, you cannot touch, you certainly cannot bite into it, for they you would have true knowledge, and knowledge can be a dangerous thing.

I promised you some choice tweets, and here they are, people from the scientific community who are most disturbed by KCL’s rejection of Professor Coyne’s request. I am not aware of these people having shown an interest in ME/CFS before (though I apologise to any of them if I am wrong about that):

The university states that it believes it is “entitled to take into account the wider dealings and publicity surrounding the project when considering the motive behind this request”. I would say that you can’t have your cake and eat it (I don’t feel the need to stretch the apple/orange analogy any further). If we are going to consider the wider publicity surrounding the project then we must also consider how the rest of the scientific community feel about this, as well as the patients – that’s what this is all about, I’ll happily remind you; patients are sick with this dreadful disease, they live with it night and day and they deserve to be heard also. More than 11,000 people have signed a petition for misleading PACE claims to be retracted, so there is a clear public interest in this data being made available. It was heavily funded by the public purse and has been highly influential in determining the treatment that patients with ME/CFS get, both under the NHS in the UK and also in many other countries across the world. This really matters because there is a lot of money being wasted if the PACE treatments don’t actually work, and to make matters worse there is strong reason to suspect the treatments make many patients worse. A survey of 1,428 patients by the ME Association found that 74 per cent reported that graded exercise therapy (GET) made their condition worse. I can speak from personal experience of the harm GET causes, it made me much more ill but the NHS clinic that gave me it were totally disinterested when this happened – you can read a short page about my experience on

The final part of the letter that I will highlight is the claim that Professor Coyne’s request is vexatious and may lead to harassment of the authors. It seems that no PACE author’s mouth ever opens without the word harassment or vexatious or some other slur on patients being voiced. There are around a quarter million patients with this disease in the UK, which includes many children, as well as adults (to put that into perspective there are around 100,000 with multiple sclerosis, so ME/CFS is a very common disease). Worldwide we are talking about millions. Even if these claims of harassment were true – and I have not seen evidence that they are – it would still be unethical to smear all patients by voicing such claims ad nauseum. The truth though is far more disturbing: these comments come out over and over again because it is very effective at stealing the voice of patients who have been raising concerns about the quality of the PACE trial and the harms of GET. What Professor Coyne and the science community are experiencing now, is exactly the same as patients have had to put up with for years now.

Sadly, with all the bad press that PACE has been getting lately, I am sure these claims of harassment, or abuse, and vaguely described bad behaviour will be voiced loudly in the very near future. Probably in a national newspaper. I would be surprised if we didn’t hear these slurs in the next week, or two at most. Patients are used to this. As if living with this horrid disease weren’t enough, we get collectively slagged off on a very regular basis. It is cruel. I lost my life age 27, and I am hurt by this, but I can’t tell you how bad I feel for children who have to put up with this as well. It is a great injustice, and in my opinion everyone has a responsibility to study these PACE papers carefully, to listen to the criticisms being raised and to reason this through in their minds. And if a certain conclusion cannot be reached without seeing the data the PACE studies are based on then people must insist that the data is released. I am grateful to Professor Coyne and a number of others who have done this, and I hope others join them.



It didn’t take long. An hour or two after publication, we got a troll smearing ME/CFS patients (for avoidance of doubt, I am not referring to the first tweet below but the reply by AS):

Professor Coyne, of course, has bitten the fruit of the ME/CFS world and knows this for what it is. I encourage others to do so. ME/CFS patients are not “nut cases” they don’t send “death threats” “letter bombs” and you don’t need police protection from us. We are, like you, just normal people. I have a family, and friends and I consider myself a nice guy. Before I was ill I worked in quality management for an international software firm. I was very good at it. I just got randomly unlucky and got this disease. I was young and thought I would never get ill. Even my grandparents are healthy in their 90s so I just didn’t think this could happen to me.  People like this guy want you to believe I am a terrorist though. Why is that?

I will continue to call people out who attack patients in this way and make unethical smears against a population that is undeserving of it. We actually deserve your compassion and support.

Food Poisoning: National Health Service 0 – uBiome 1


The culprit

Food poisoning is not a lot of fun. Especially when your immune system is dysfunctional as mine is from ME/CFS.

It was my mother’s birthday in August, and we took her for a meal in a nice village pub near Bath, England. I ordered a very tasty looking quail for the starter. It was a char-grilled piece and around half way through I turned it over and noticed that the other half was barely cooked. In fact the middle was completely raw. I had already eaten a great deal of it without really paying attention. Stupid!

Anyway, I thought it was likely to give me food poisoning but there wasn’t much I could do but wait and see. I didn’t have to wait long. Around four or five hours later my stomach was very angry. I felt extremely nauseous, though strangely did not vomit. It was terrible at the other end though…that’s all I’m going to say about symptoms. This went on for three days in which time I didn’t eat anything else. Then I started to improve a bit and thought the ordeal was over. Not so quick.

I started eating some mild foods, and then some stronger foods after a couple of days, but after about three or four days later I began feeling worse again. It got so bad I had to stop eating altogether for a second time. This time for a little over two days. I repeated the same process again but after around a week I started getting ill for a third time!! What the fuck!?!

By this time I had been to the doctors half a dozen times. My stomach in particular was so painful and I had provided two stool tests which came back normal. I was told that sometimes they couldn’t culture things very well. This NHS had no plan B for dealing with this, it’s good that the doctors were sympathetic but what I really needed was an avenue we could go down to figure things out, and there simply wasn’t one. Great. It seems ridiculous to me, to be trying to grow the bug in a dish when we are so rubbish at it! With ME/CFS I am used to having to doctor myself, so I sat down and gave it some thought. Could uBiome help, I wondered?
16S rRNA sequencing should pick up whatever is in the sample, it doesn’t need to be alive, it doesn’t need to be grown. I had a spare uBiome kit lying around so I sent off a sample.

I then had another four days without any food. Even in the days between when I had had food it had been very bland and not very nutritious. I was very weak, had lost a lot of weight and was pretty desperate and so I held out as long as I could in the hope of killing whatever it was off. Fasting for four days is not easy, especially when you are sick with food poisoning, ulcerative colitis and ME/CFS. But I managed it. I couldn’t do any longer, I had to eat. After this I was well enough to eat bland food for two weeks, then move onto more advanced food. I am still not right now, a month and a half on. I’d say 80% better. Progress is very slow.

My uBiome results arrived yesterday. It didn’t take me long to spot the problem: Campylobacter ureolyticus.
This was not present in any of my previous uBiome tests, and Campylobacter is a very common cause of food poisoning, especially via poultry; the avian intestinal tract having been identified as the main environmental niche. It is also a pathogen that was originally identified via molecular, rather than classical culture techniques, suggesting we aren’t great at growing it…The two most common species of Campylobacter recorded to cause gastroenteritis are C. jejuni and C. coli but there is acknowledgement that C. ureolyticus might be under reported, with some studies suggesting C. ureolyticus (24.4%) occurs more frequently than C. coli (6.7%). The most common species identified being C. jejuni (72.4%).

I think that is a pretty awesome result. The NHS couldn’t figure it out, but uBiome could. Maybe one day the NHS will catch up?

Further reading, for geeks:
O’Donovan D et al. Virulence. 2014;5. Campylobacter ureolyticus: a portrait of the pathogen.

Magna Carta’s 800th Birthday

800 years ago, king John, put his seal to The great charter. His barons demanded this of him; they had had enough of his tyranny.

No longer would they allow him to lock them up without charge, to hold their families hostage, murder who he liked,  steal their lands and possessions, extort them with taxes and have control over who was appointed in the powerful church.

Stephen Langton, the Archbishop of Canterbury had just returned from exile in France, and was instrumental in Magna Carta coming about. He was there when it was sealed.

800 years ago today it was either agree to the charter or have civil war. And the French were waiting in the wings to invade if given half a chance.

Stephens brother Simon (briefly Archbishop of York at the time of Magna Carta) also played a key part, and would later be Chancellor in France and encourage an invasion  of England by the French Prince when king John reneged on Magna Carta.

It seems we have a lot to thank the Langtons for. And yet the history books wrongly state they were born in Langton by Wragby, in Lincolnshire.

The mistake comes from Powicke who in 1928 gives a reference to a manuscript talking of a mill at Langton which he claims is Langton by Wragby. However, manuscripts of this time rarely identified the specific village as the context (the names involved, the other places mentioned) made it clear which Langton village was being written about. In this case, you have a mill (which of course, requires water) which cannot have been at Langton by Wragby as it has no river.

The brothers actually came from Langton by Horncastle where there is a river and a mill as seen in other deeds in relation to the Langtons, including one in 1236 in which Simon Langton is sorting out the dowrie of his brother Walter’s widow. And other deeds exist showing their father Henry Langton, also at Langton by Horncastle. 

There appear to be no deeds which talk of any Langtons at Langton by Wragby in the time period (1100-1300) which is no surprise as it was very small at the time of Domesday and probably was not a significant settlement in the following centuries.

History books should not be taken at face value. Mistakes are often made and it’s important to use your own brain to evaluate the evidence and see if you agree with the conclusions reached. Much like scientific research, such as the PACE trial in chronic fatigue syndrome, that concluded graded exercise therapy (GET) leads to recovery in patients, when in face the opposite is true, as shown in the recently published survey conducted by the ME Association which found the majority of patients had a decline in health following GET.

Thankfully, we are free to challenge erroneous conclusions, in large part due to the work of the Langtons and the Barons in opposition to king John 800 years ago, though with our rights ever being eroded in this modern age, and the voices of individuals increasingly drowned out, you have to wonder if it isn’t time for a new Magna Carta. As was the case 800 years ago though, people have to be pushed very hard before they finally say, enough is enough.

Gut Wars: Diversity

Following on from my recent guest blog for uBiome, I decided to take a closer look specifically at my gut diversity. Here are the counts for comparison between my first test in March 2014, shortly after antibiotic treatment, and a year later in March 2015:

Interesting, I’m sure you’ll agree.

This has me wondering what normal is? I mean, uBiome’s norm when looking across all their samples, I wonder what that looks like. I don’t know the answer to that at the moment, and it may not be that relevant for the average person, but if you’ve been on antibiotics or had some other loss of gut diversity then it would certainly be useful to know. Though even some results from just a handful of “healthy” people would give a fair indication, I’d bet.

It is almost certainly an improvement that I now have twice the level of species diversity I had a year ago (leaving aside which species these actually are, as that is also likely important), but how much further have I to go? Is the norm 100, 150, or 500?

If you’re reading this and you have taken a uBiome test then I’d love it if you posted your stats for comparison. It’s quick and easy.

The easiest and quickest way to find this info is to click “Raw Taxonomy” in your uBiome dashboard. Then Ctrl+F to run a search for “phylum (beware that Subphylum and Superphylum will be counted if you don’t specify the leading inverted commas in your search) and then “class – “order – “family – “genus – one at a time and see how many hits you get in each case. I suggest using Chrome browser rather than Firefox which won’t return more than 100 hits.

Alternatively you can put your results into a spreadsheet, great instructions for which can be found on Richard Sprague’s blog. This option makes it easy to get those counts but also to manipulate your data in any other way you fancy going forward.

So do me a favour and post your diversity counts.

I’ll just finish this post off with a quick look at which of my bacteria went extinct in the last year. Given my diversity has vastly increased, I’m not expecting many. Here’s the species level data (courtesy of Richard Sprague’s analyser):


The disappearance of C. butyricum is interesting, it can be pathogenic but it is also widely used as a pro-biotic in Asia as a treatment for it’s misbehaving cousin C. diff. And as you can guess from its name it is a butyrate producing bacteria. Last year C. butyricum made up more than 1% of my total gut flora, which is much more than usual. Now it is gone. In fact, many of my clostridium have been kicked out, half of these now-extinct species are clostridium, many of which are normal in the human gut but also can be pathogenic. Last year the clostridium genus made up 8.63% of my gut whereas now it is at a normal level (1.56%), so probably good on the whole.

B. catenulatum is gone too, which seems a shame. I guess it has been out competed by the other species of bifidobacterium that I introduced over the last year.

L. lactis, often present in dairy products such as cheese, is gone. Why? No idea.

I’m pissed to see R. bromii is gone. It’s considered a cornerstone species and I was pleased that after my antibiotics, when I first tested, there was a tiny amount still holding on. But now it is gone. Why are my ruminococcus abandoning me? I’ll be looking at which cornerstone species are missing from my gut next. R. bromii is not the only one, and these key species being absent does not bode well for my future gut health.

That aside for now, when you consider that these 19 species pictured above were missing from my second sample, it makes my increase in species level diversity even more impressive! I started with 55 species, lost 19 of these and gained 73 new species. I must be doing something right – or at least, More things right, than wrong!