This Week’s M.E. News

It’s that time of the week again! M.E. news headlines and blog updates from the community. There’s been a lot of buzz this week with bold M.E. activism in the EU parliament, the Cochrane review being released and flu season around the corner for those of us in the North. Get comfy and enjoy!

If you’ve missed my previous summaries and would like to catch up with older community news, click here!

The paragraphs in this section might include some of my own thoughts in italics, feel free to add your own thoughts in the comments section at the bottom of this page too!

Please share any of these articles if you have found them interesting or helpful – it will help us to raise awareness.

Petition requesting EU fund biomedical research

This week Evelien Van Den Brink, a Dutch citizen with Severe ME, spoke to the Committee on Petitions in the European Parliament while lying on her stretcher. She made a powerful appeal to members of parliament, asking them to fund biomedical research into M.E. Her appeal was met with applause and a decision to keep the petition for funding open although the minister’s reply was that they do not allocate funding to specific diseases. >> Read More & Watch Evelien’s appeal

EU citizens can sign the petition requesting biomedical research funding here.

Disappointment over Cochrane review on ME/CFS

Cochrane is an independent review agency of international researchers and organisations. It evaluates the quality of medical evidence and their reviews are highly respected in the medical field.

This week the ME community was once again disappointed by the Cochrane review on exercise therapies for ME. The main reason being their conclusion that exercise therapy “probably has a positive effect on fatigue in adults with CFS”. They say that they reached this conclusion due to lack of evidence to support otherwise.

It is important to keep in mind that their review was based on evidence related to patients diagnosed with the very broad Oxford criteria which focuses on fatigue as the defining symptom, not PEM. So this review may not apply to people diagnosed with other criteria such as the CCC or ICC which require PEM/PENE as a mandatory symptom and likely includes patients with all sorts of conditions which have fatigue as a key symptom. Cochrane has announced that they will launch another review in 2020 as they realise this one did not resolve the issue for ME patients. >> Read The Review

Here are the responses from some of the leading ME charities:

MEAction does not support Graded Exercise as treatment for ME and is very concerned about the conclusions of this review.
Emerge Australia doesn’t think that this review accurately reflects the patient experience and are hoping to be included in the next review process.
The ME Association does not agree with the way Cochrane analysed the evidence for GET nor does it agree with their conclusions on the matter, but they are encouraged that Cochrane is willing to work with ME patients and charities to produce a more robust review in the future.

Individual symposium talks now available on YouTube

You can now watch or listen to the individual talks from the OMF-sponsored Community Symposium on the Molecular Basis of ME/CFS that recently took place at Stanford University. Unfortunately transcripts are not yet available, but will be coming soon. >> Go To Playlist

Postcards To Doctors is up and running again (US)

Doctors, nurses and social workers, can receive continuing education credits by watching Unrest. This CME program, in partnership with MEAction, is available through the American Medical Women’s Association and Indiana University School of Medicine.

ME Action launched a great initiative through which patients and allies can invite their local health care providers to participate in this program to earn extra CME credits by sending hand-written postcards. It’s called Postcards To Doctors. >> Read More

A leaflet to help school nurses support pupils with M.E.

Emerge Australia have created a leaflet to help school nurses better understand M.E. and how they can help the pupil and the school better manage the condition. It includes facts about M.E. and how it affects a patient and lists recommended adjustments that can be made at school to accommodate the child with M.E. You can download the leaflet here or read more here.

Flu Season: Should you get the flu shot?

Whether or not to get the shot is a very personal choice, some people with M.E. seem to find it beneficial, while others say it made them worse. In the M.E. community there seem to be 2 distinct groups of people: those who fall ill constantly, picking up every bug going around, and those who don’t seem to pick up another virus after falling ill with M.E. Personally, I’m in the second group and have never felt the need for extra protection from the flu. Below are some articles that could help you decide:

ME Association: free leaflet about the Flu vaccine (UK)

There are no clear answers as to whether of not you should or shouldn’t have the vaccine if you have M.E. The NHS does however provide free shots annually to those who are at higher risk of complications if they get the flu. This covers people with pre-existing conditions, including neurological conditions such as M.E.

The ME Association has updated their leaflet about the flu vaccine, you can download it here and speak to your doctor about the options or read more here.

Virology: 2 reasons to get the flu shot annually

Gertrude U Rey from Virology Blog is explaining the reasons in favour of getting the flu shot and says that although both vaccinated and unvaccinated people can fall ill, the most severe cases are usually those who were not vaccinated. >> Read More

ICO slaps decision notice on General Medical Council

Passionate ME advocate, Dr Sarah Myhill, made a complaint to the General Medical Council (GMC) about the PACE Trial authors last year and they recently rejected the complaint. Dr Myhill tried to obtain the evidence base for their rejection, and has been consistently denied proof of evidence for their decision. She then complained to the Information Commissioner’s Office (ICO) and they have upheld her complaint.

The ICO has given a Decision Notice to the GMC. The GMC is now required to release the evidence on which it based its decision not to investigate the PACE authors. If they don’t, they are to admit that their decision was not based on any evidence at all. If there is no evidence base, Dr Myhill will take their decision not to investigate the PACE authors to the High Court for a Judicial Review. >> Read More

Additional Articles Of Interest

ME Action release next parts of their Values & Policy Initiative with “Why Civil Disagreement And Respect Are Essential To The ME Movement” where Jenny discusses effective communication and the benefits and pitfalls of engaging on social media, and with “Inside/Outside Activism: Why We Must Shout in the Streets and Sit at the Table” Jim Eigo compares ME activism to the AIDS “ACT UP” movement of the 80s.
The Bateman Horne Centre outline their ongoing projects in “Ongoing Developments at the Bateman Horne Centre“.
You can get ahead of the holiday madness and support the ME Association by buying your Christmas cards from them – Christmas cards on sale now.

Updates From M.E. Bloggers

The following people with M.E. have updated their blogs this week. I know they’d love to have a visit and some comments. If you find their content helpful or interesting, why not share the links on social media too!

Clare shares her adventures on her powerchair named Frog

Clare has spent the past 9 years being pushed in wheelchair, dependent on others to get her around, but last month she was able to go on a little holiday with her family to the coast and this time she could move about more independently on her new powerchair. This week she’s telling us all about her adventures with Frog. >> Read More

Ali shares some tips on learning to trust your instincts

Being a very rational and logical thinker, Ali was not used to even recognising her natural instincts about things. It is something she has learned since becoming ill with ME. This week she is sharing some of the ways she has learned to hear and trust her instincts when making decisions. >> Read More

ME/CFS Skeptic ponders why scientists are turning a blind eye to blinding

Blinding is the process by which trial participants and therapists are kept unaware of who is reveiving the treatments and who is not. This process is meant to prevent placebo effects and result bias which comes when you are expecting a certain outcome. This week Skeptic shares the fascinating history of, and highlights the importance of, blinding in randomised, controlled trials. >> Read More

Whitney applies Dumbledore’s advice to life with invisible illness

People with M.E. often hear the comment ”it’s all in your head”. Harry Potter asked Dumbledore once “Is this real? Or has this been happening inside my head?” and he replied “Of course it’s happening inside your head, Harry, but why on earth should that mean that it is not real?”

This week Whitney shares her thoughts on the subject and uses that scene from Harry Potter to illustrate her point. She’s also sharing a few responses she will use next time she is told “it’s all in your head”. >> Read More

Corina shares her love of puppet-making

Corina has loved making dolls and puppets since she was a young child. This week she shares her story, how it all started, how illness affected her ability to teach puppet-making and how she finally adapted her methods so that she could continue making puppets and teaching others to do the same. >> Read More

Naomi continues her review of the BACME guidelines

A couple of weeks ago we saw Naomi’s first post in this series on the British Association of CFS/ME (BACME) guidelines on ME. This week she is focusing on the guidelines’ incorrect assumption that deconditioning is a key factor in the ongoing symptoms of ME and their recommendation for incremental pacing and graded activity as a treatment, as well as their failure to address other issues relating to severe ME. >> Read More

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2 Comments

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craftschronicillnessandadulting

October 23, 2019 / 10:02 pm Reply

Such great info! I still vacillate on the flu shot and it’s always great to be better informed. Also, thank you for the shout out. I really appreciate it. ? Hoping today is kind to you!
- Chronically Hopeful
  
  October 23, 2019 / 10:19 pm Reply
  
  Thanks, Mishka. This week has been quite good for me. I hope your week is going well too.