Whoops! We seem to have fallen behind on maintaining this page - sorry! - but we're posting frequent updates on our Facebook page and also doing pretty well on Twitter @leedsmenetwork so please follow the links to keep updated! We still send out regular news emails too. Please email us if you would like to receive these.

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We usually include some snippets of ME/CFS related news in the emails we send out to members, so we thought we would also share them on our website. If you would like to receive these occasional emails, please contact us. We never share email details with anyone else. For more news, follow us on Twitter - see button above.

January 2017

Here's a *very* interesting interview with US researcher Dr Nancy Klimas about recent research. Particularly exciting are her findings that 65% of patients are responding well to the drug Rituximab and 30% are completely cured! Klimas says: 'we are about curing people of this miserable disease". It seems that a subgroup of people with ME/CFS have an autoimmune antibody (driven by an overactivated immune system) which causes central nervous system toxicity. Rituximab targets this antibody. What is needed now are biomarkers to identify patients who fit the subgroup which responds. You can find the interview here:

Meanwhile, clinical trials of Rituximab are continuing. One of these is being run by Oystein Fluge and Olav Melle in Norway. Fluge recently reported on another study, this one illustrating that people with ME have difficulty converting carbohydrates into energy, thereby leading to shortage of energy and a buildup of painful lactic acid in the muscles. Here is an interview with Fluge about this study. Plus here's another article with further information (free signup needed.): Possible Mechanism Identified

Finally for this month, you may be interested in this article from the BMJ about how doctors are letting down their ME/CFS patients. "When it comes to hierarchies of illness, evidence shows that ME features at the bottommost end of the medical “favoured” list". Let's hope some doctors read this and take It on board.

Late November 2016

With all the controversy over the MEGA study (which I mentioned earlier this month), I'm pleased to say that the ME Association are now rising money for a (different) metabolomics study which clearly deserves our support. There are no supporters of the PACE Trial involved and the samples to be studied (which come from the ME biobank) will include the severely affected. More information here

And there's a chance to find out about the latest research findings: here's a useful video (about 18min) in which researchers and patient advocates share their 'take-home-messages' from the recent IACFSME Conference in the USA

Early November 2016

Some good news and some frustrating news:

First of all, the IACFSME conference in the US has been hearing all about the latest biomedical research into ME. There are lots of developments and there's an excellent YouTube video by Dr Lucinda Bateman which brings us up to date with this and all the other latest research news.

In contrast to the good news from America, things have been less encouraging here in the UK. You probably couldn't avoid the splurge of publicity on Monday morning about Prof Esther Crawley's online CBT study for children with ME/CFS. It's strange how the IACFSME conference got largely ignored by the mainstream UK media, as did the recent final debunking of the PACE Trial, but Professor Crawley's trial of CBT which she claims can 'cure' ME/CFS was all over the papers, TV, and radio even though it hasn't even started yet. As so often, the reports were knee deep in misinformation. Crawley cited a Dutch study which claimed to 'cure' two thirds of patients but failed to mention that a long term follow-up study had revealed no difference between CBT and 'normal care'.

This is the sort of reason why patients are so concerned about Prof Crawley's involvement with the proposed MEGA biomedical study which I mentioned in last month's news. Many patients have now signed a petition (called OMEGA) expressing no confidence in MEGA and we urge you to consider putting your name to it. Much as we want to see biomedical research, we don't want to see funds squandered on a project in which the severely affected are largely ignored and the patients are selected by Prof Crawley who supports the psychogenic 'biopsychosocial' apporach to ME and has shown herself to be incapable of diagnosing the condition.

You can find the OMEGA petition here.

The following blogs etc explain more about the reasons for the OMEGA petition:

The latest OMEGA blog

Why I am Signing the Petition to Oppose MEGA

Why We All Need to Sign the OMEGA Petition

And finally, by way of balance, here's the latest blog from the MEGA team.

October 2016

Some very good news: the GMC has dropped all charges against pediatrician Dr Nigel Speight who has helped many children with ME. All restrictions have been lifted so he can go back to treating his patients. This is very important as Dr Speight is the only pediatrician in the country who really understands ME.

MEGA: This is a complicated one. Action for ME recently circulated a petition requesting support for a large new biomedical study of ME/CFS called MEGA. So far so good. Such research is desperately needed. But on closer inspection it turned out that Prof Peter White, one of the principal authors of the now largely discredited PACE Trial, and Prof Esther Crawley, the pediatrician who gives graded exercise therapy to children, were both involved with the study. Additionally it was announced that patients for the study would come from the NHS clinics, a sample which would not include severely affected patients. When patient advocates protested, further information was released but many concerns still remain. Please take a look at the links that follow if you are able to do so, but if you aren't well enough don't worry, I'm sure it will sort itself out...

Making the Best of MEGA contains the letter which Leeds ME Network has sent to MEGA expressing our views. Just to state the obvious, the views in the letter are those of 'the management'.  You may disagree. Please leave a comment on the Spoonseeker blog post this links to if you would like to discuss the issue with us.

What Should be Done about the MEGA Project? gives the perspective of Prof James Coyne - and also reprints a letter on MEGA from Dr Charles Shepherd of The ME Association

The original petition from Action for ME is here (I had hoped to insert a link to the petition but it seems to be offline. I'll try again later.)

Here is an update from MEGA in response to questions from patients

Instructions for 'un-siging' (if you have signed the petition but have changed your mind since finding out more)are here


September 2016 (now updated)

A very important study into the metabolomics of ME/CFS by Dr Robert Maviaux and his team in the USA has just been published. As Emily Beardall explains on the Action for ME web site: the study involved "measuring the chemicals in our blood created by the different steps and by-products of metabolising, or breaking down, the energy and nutrients from our food into the chemicals that can be used for energy, hormones and building blocks of new cells". The study may lead to a diagnostic test. In his analysis on the Health Rising website, Cort Johnson explains: "Using just eight and thirteen metabolites in males and females, respectively, Naviaux was able to diagnose 95 and 96% percent of the male and female ME/CFS patients correctly". Apparently these particular abnormalities were found in the vast majority of ME patients tested, irrespective of the particular details of their condition (such as the onset trigger). In addition to these 'signature' abnormalities, numerous other abnormalities were found which vary from patient to patient, which suggests that possible treatments may have to be tailored to individual patients. The study suggests that what may be happening is that the body is going into a state of 'hibernation' which permits survival under adverse conditions but (as The Telegraph describes it) 'at the cost of severely curtailed function and quality of life'. A larger study to further assess these results has already begun. Prominent researcher Prof Ron Davis (whose son Whitney has severe ME) says he believes this is "the most important and groundbreaking study of ME/CFS to date” and that Naviaux’s metabolomics research has put us “finally on the right path to understanding ME/CFS.

In another important and positive development, a recent Freedom of Information Act Appeal Tribunal has confirmed that the PACE Trial researchers should release the data requested by Australian patient Alem Matthees to allow him to conduct the main outcome and recovery analyses specified in PACE’s own protocol but abandoned during the trial itself. No convincing reason was given for the change in protocol and there is widespread suspicion that the change was made because the researchers didn't get the results they wanted. The trial cost £8million of public money and Queen Marys University London spent £200,000 in their appeal against releasing the data. See here for more information.

Update: the PACE data has now been released. An initial analysis suggests that the number of patients improving had been exaggerated in the original paper by a factor of 3. This confirms suspicions long-held by patients and scientists who have studied the trial critically that if the PACE investigators had stuck to their own original analysis protocol, PACE would have appeared to be a far less successful trial. Further analysis will follow. More info here.

Important update: Please sign these petitions calling for further trials of GET (graded exercise therapy - as used in the PACE trial) for ME/CFS to be scrapped in view of the widely reported harmful effects on patients. This is particularly important in view of the upcoming MAGENTA trail on children, whose parents have been informed there is no risk of danger from the treatment. Please note there are two petitions to sign, an international one and also a UK parliamentary petition.

Meanwhile back in the US, the Agency for Healthcare Research and Quality has reconsidered the evidence for the use of graded exercise and CBT for ME/CFS following widespread criticisms of the PACE Trial and of the Oxford diagnostic criteria which were used in PACE and other studies. They decided that there is now insufficient evidence for the use of graded exercise and (at best) only low strength of evidence for the use of CBT. More information here. In the UK, graded exercise and CBT are still recommended for ME/CFS by the NICE guidelines but this may shortly be reconsidered.

August 2016

Here's an interesting article on the new ME/CFS Biobank, 'paving the way for bigger and better research'.

Action for ME is asking patients to share their experiences of applying for the PIP benefit by completing a short survey. Your input will be anonymous - it will be used to help formulate AfME's evidence to the DWP for the forthcoming independent review of the benefit.

July 2016

Researchers at Cornell University have found biological markers of ME/CFS in gut bacteria and inflammatory microbial agents in the blood. The senior researcher Prof Maureen Hanson said "our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.” Follow the link for a fairly short, interesting and readable article about this study.

Please consider signing this petition calling for more money to be invested into scientific research to find the cause of M.E./CFS

Those of you who are interested in the work of Dr Sarah Myhill might like to see this recent talk she gave to the Oxfordshire support group.

We mentioned in a previous email that Dr Indra, a practitioner in functional medicine (and therefore working along similar lines to Dr Myhill) is now practising in Roundhay, Leeds. She now has her own website. Note that we don't have direct experience of Dr Indra or know what expertise she has in ME/CFS specifically. We should be very interested to receive feedback if you consult her.

If you are having to deal with a nurse who has got the wrong idea about ME/CFS, it might be worth showing her/him this recent article from the Nursing in Practice website which debunks the 'all in the mind' myth.

We mentioned a while back about the recently introduced Marriage Tax Allowance which effectively amounts to additional money for some people who are married or in a civil partnership. Apparently only 16% of those eligible have claimed it, so we thought we would mention it again! You can find out more about it here.

June 2016

The Millions Missing protests last month are generally considered to have been successful. A bit more exposure in the national media would have been helpful but at least we made the London Evening Standard.

Well done to those of you who sent in shoes for the protest!

There are transcripts of numerous speeches from the Millions Missing day on the #MEAction website, including this one from Prof Ron Davis whose son is severely affected by the condition.

Professor Davis is currently studying vast amounts of data from twenty severely affected patients (and ten controls). His initial findings are very interesting: "preliminary data show serious problems with the biochemical processes needed to convert sugars and fats from food into energy the body can use. If these findings are replicated, this could prove a major step forward in understanding ME/CFS".  More here.

The US National Institutes of Health (NIH) has requested public input to help decide the future direction of ME/CFS research. We have until June 24th to send in our ideas. Activist Jennie Spotilla gives more information and shares her own very comprehensive recommendations here.

Funding has also been announced for an important new genomic study to investigate biomarkers for ME/CFS.

The latest edition of the ME Association 'purple booklet' which summarises the current state of knowledge about ME/CFS has just come out. It is intended principally for health professionals but many patients also find it useful.

And finally, please consider signing this petition asking for more ME/CFS research here in the UK.

May 2016

#MillionsMissing demonstrations are being held internationally to mark ME Awareness Month. Even if you are not able to attend these (and, let's face it, most of us can't) there's an opportunity to take part 'virtually'. The London demonstration takes place on 25 May at the Department of Health. If you are not able to attend in person, you are invited to send a pair of shoes to represent you! Full details here.

There are also numerous other ways to take part virtually. Full details here.

Here's some more information about these demonstrations:

#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease.  At the same time, millions are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.

On May 25th, patients, caretakers, family members, friends and allies will be participating in demonstrations all around the world, in London, Washington, DC, San Francisco, Melbourne, and many more locations!

If you are well enough, we hope you will be able to take part in some way to help get this important message across.

April 2016

The CAB have issued a new detailed online guide to completing the dreaded ESA form which you might find useful. You can find it here. It may be a good idea to also consult some ME-specific advice, such as the downloadable form from the ME Association.

March 2016

Researchers in Australia have claimed to find biomarkers in the white blood cells of people with ME/CFS which could be used as a diagnostic test for the condition. There's a general feeling that they may be getting a bit ahead of themselves and more information is needed but it's promising nevertheless. A diagnostic test would be a very big step forward.

The forthcoming US NIH study of post-infectious CFS/ME is looking promising. Patients have had a few concerns about it, some of which have already been addressed while others remain. But the NIH does appear to be determined to finally make substantial progress in understanding and - eventually - treating our condition. Which is not before time but very welcome nevertheless.

Those of you who are interested in the nutritional/functional medicine approach to ME/CFS might like the opportunity to read the first fifty pages of Dr Sarah Myhill's book 'Sustainable Medicine' for free.

February 2016

You can catch up on a lot of the the latest research by taking a look at the UK CFS/ME Research Collaborative Conference Report which has overviews of 21 research presentations and 5 workshops from last October. You can download it free of charge from Action for ME.

Other research news: a brand new study has demonstrated evidence of 'brain fog' in patients with ME, not that you will be in any doubt that it is there unfortunately! The study used qEEGs to illustrate that there is sufficient dysfunction in the brain to cause such a problem. The researchers say: “qEEG will not provide a stand-alone diagnostic, but would integrate into a clinical diagnostic regimen.” Similar issues with brain function are seen in other serious neurological disorders which is why qEEG/Loreta would need to be used in conjunction with other tests and/or clinical observations to confirm diagnosis. This study was just of a single patient but apparently larger studies are on the way.

Additionally, the promised US National Institutes of Health Study of 'Post-Infectious Fatigue' will soon be getting underway. After a shaky start in which some misleading information was released by mistake, it is starting to look good. There will be 40 ME/CFS patients who will have to fulfill several diagnostic criteria including the well regarded Canadian Criteria plus have fatigue which was precipitated by an infection to take part. There will be extensive testing and special emphasis on the key symptom of post-exertional malaise. More details here.

We've just discovered a Facebook page which has extensive free information on benefits claims and appeals. It's called the ME & Chronic Illness Benefits Advice Group. Just type it into your Facebook search box. It is well worth a look. Unfortunately the benefits system is such that it is vital to get informed and preferably to consult an advisor before filling in forms etc. so this page is an invaluable source of information.

Those of you who are interested in a nutritional approach to ME/CFS might be interested to hear of Anne Pemberton (no relation to Sue!), a nutritionist who can be consulted in Leeds. She works in a similar way to Dr Sarah Myhill, who we have mentioned here before. Anne is also a registered nurse so is able to take bloods. We were also interested to learn that there is now a functional doctor in Leeds: Dr Indra Barathan, who can be consulted at the Good Health Centre in Roundhay. She doesn't seem to have any special interest in ME/CFS, but we mention her because once again this is a similar approach to medicine to that which Dr Myhill uses, looking at the whole person instead of specific conditions. To see their contact details, please visit the Local Links page on our website and scroll down. If you consult either Anne or Dr Barathan, we shall be very grateful to receive your feedback so we can pass it on to others. Please note our usual caution that we do not recommend any particular treatment, and that any treatment can make you feel worse as well as better. Before embarking on any new treatment, it is a good idea to discuss it with your doctor first - though whether they will know anything about it is another matter!

January 2016

We can start the new year on a positive note by reporting that Dr Francis Collins, Director of the US National Institutes of Health, has made some encouraging noises about future research investment for ME/CFS. He says: 'ME/CFS is a program priority now'. Possibilities under discussion for research include 'everything from basic science – the metabolome, microbiome, immune system, imaging – to clinical trials for promising approaches, including Ampligen and Rituximab'. You can find more details here  Rituximab studies are already taking place in the UK and Norway.

Meanwhile, the celebrated researcher Prof Ian Lipkin has announced that he thinks it should be possible to solve the mystery of ME/CFS within 3 to 5 years - providing (he adds crucially) the resources are made available. You can read more, including some background on Dr Lipkin here

Cort Johnson has produced a useful summary of 2015 in the world of ME/CFS, while there's a good article here on the legal position re ME/CFS, useful if you feel you are being coerced into inappropriate treatment. Finally, this Canadian study provides a review of the current state of knowledge regarding the diagnosis and management of the condition, intended for health professionals and the general reader alike.


December 2015

One of our members, Kate, has a child with ME/CFS and is concerned at the lack of available NHS treatment for children in our area. Healthwatch have told her that she needs to find others in the same situation so they can bring pressure to bear on the powers that be to provide some. So the hunt is on! If you have a child with ME/CFS and live in West Yorkshire, please contact us and we will put you in touch with Kate.

There was a good article on ME/CFS on the Telegraph website recently by Dr Charles Shepherd of the ME Association. This was one of several articles which have appeared to redress the unhelpfully misleading article they published a few weeks previously. Unfortunately Dr Shepherd's article did not appear in the print edition, so the Telegraph has not entirely made amends for the damage they have done. Dr Shepherd's article is here

ME/CFS patient Sally Burch has produced a very useful slide show about the use of a heart rate monitor to help with pacing/activity management. Apparently this is recommended by the NICE guidlines but the requirement is usually ignored. The slide show is well worth a look: http://www.slideshare.net/SallyBurch/heart-rate-monitoring-and-nice-guideline-for-me
So are the associated blog posts:

http://sallyjustme.blogspot.co.uk/2015/11/HRmonitoring-NICE.html

http://sallyjustme.blogspot.co.uk/2015/12/startingHRmonitoring.html

Despite numerous requests and appeals, the researchers from the controversial PACE Trial are still refusing to release data from the trial, flying in the face of a growing tide of opinion that data from all medical trials should be made freely available. They say that the freedom of information requests are 'vexatious' and are causing 'distress' to the researchers. It is worth considering that according to a recent ME Association survey, 74% of patients receiving graded exercise therapy, one of the treatments recommended by the trial, say their condition was made worse by the therapy. Fortunately, graded exercise therapy has never (as far as we know) been used at our local CFS/ME clinics. The PACE Trial was publicly funded and cost £5m. You can find a summary of David Tuller's critique of the PACE Trial here

There have been two recent instances of a large volume of emails and online comments from ME patients really making a difference: in response to that misleading Telegraph article (which resulted in better informed pieces being published) and also in America, where representations from patients persuaded the National Institutes of Health to remove their online recommendations derived from the PACE Trial. This post on the Leeds-based Spoonseeker blog 'Time to be Heard' has useful advice on how to make effective comments in the media etc.

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