Health services for ME in Wales – a 20 year WAMES update

Health services for ME in Wales – a WAMES update

 

WAMES in Wales

It is now 20 years since the Welsh Government (WG) was established. At that time NHS Wales became independent and WAMES began campaigning in Wales for improvements to health services.  Over the years we have talked to numerous Health Ministers, civil servants, AMs, Health Board executives and NHS staff. We have taken part in focus groups, stakeholder groups, working groups and scoping exercises. We have run surveys of patient experience and campaigns to raise awareness in government and the NHS.

That is what WAMES has done, largely behind the scenes, to try to improve healthcare for people with ME. How did the Welsh Government and NHS Wales respond?

Welsh Government & ME

  • Since 1999 many AMs over the years have joined us in asking questions about the lack of awareness and services, leading to one of the largest postbags the government have received on a single medical condition.
  • In 2004 a series of Masterclasses were planned around the country.  The interest shown by GPs was so low, only one took place.
  • In 2009 a Task & Finish Group was set up to explore whether a clinical pathway was needed and decided it was.
  • WAMES joined a pathway working group to produce a Map of Medicine pathway for Wales. This was unfortunately based on the NICE guidelines and shortly afterwards the WG withdrew from the Map of Medicine database (based in England).
  • The Health Minister wrote to Health Boards urging them to implement the pathway and improve services. None appeared to do so.
  • In 2013 a second Task & Finish Group was set up with representation from the WG, NHS and patients. A report was published in 2014 outlining steps each Health Board should take to improve services. Few Health Boards have implemented more than one or two of the steps!
  • In 2014 An All Wales Implementation group (AWiG) was set up with reps from WG, the NHS and patients to oversee the implementation of the report.

Has healthcare for ME improved?

It is clear that there is an increase in the number of GPs who have heard of ME, though many still wish to call it CFS and focus on fatigue. There is still a belief that ME is difficult to diagnose and nothing can be done to help. Some still believe it is a psychological condition or that it simply doesn’t exist at all. Many patients tell us they still cannot find someone within Wales to give them an informed diagnosis or to refer them to support services.

WAMES and local groups in Wales still get too many helpline calls from people who are enduring appalling treatment from untrained and prejudiced health care professionals.

The existing services for pain and fatigue continue to offer rehabilitation services based on GET and CBT, though few people with ME are interested. Reports of relapse caused by this approach continue to reach us from people with ME who have undergone the course in NW Wales. Suicides and attempted suicides have increased in number.

Why is progress so slow?

There are many possible reasons contributing to this:

  • Continuing reorganisation and financial difficulties in Health Boards
  • Constantly changing personnel in HBs and Welsh Government
  • Lack of a clinical champion for Wales
  • No funding from the Welsh Government
  • Insistence that answers should come from within Wales, when no-one has sufficient experience or knowledge of ME
  • No obligation for HBs to implement improvements
  • Overworked doctors, who are waiting for a diagnostic test and treatments to materialise before becoming involved with this patient group
  • An unwillingness to look beyond NICE and listen to patients and explore the biomedical research
  • A feeling that ME is controversial due to the continuing activities of a biopsychosocial community that view ME as perpetuated by muscle deconditioning and faulty illness beliefs – in contradiction to the latest research.

WAMES believes that a key stumbling block is the shortage of informed GPs willing and able to diagnose.   Should diagnosis improve there would be statistics of the numbers and location of patients and it would be harder for HBs to ignore ME. The evidence for the need for services for this patient group would then be clear.

What next?

The All Wales Implementation Group (AWIG) has a new government policy lead.

Current work priorities are:

  • Inclusion of ME/CFS in IMTPs (Health Boards 3 year work plans)
  • Redesigning a clinical pathway
  • Developing patient information sheets
    Discussing the development of GP training resources with Health Education and Improvement Wales (HEIW)

WAMES will:

  • continue to represent people with ME on AWiG
  • continue to explore awareness raising possibilities with the RCGP;
  • work with the NHS in devising an ME self-management programme
  • represent Welsh people with ME on the NICE guideline review
  • take every opportunity to raise awareness of neurological ME in NHS Wales

Get in touch if you would like to support WAMES continue its work to improve services for people with ME in Wales  jan@wames.org.uk

 

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Unexplained exertional intolerance associated with impaired systemic oxygen extraction

The researchers reviewed invasive cardiopulmonary test results of 313 patients with unexplained exertional intolerance. The paper focuses mainly on a small subset of patients: “We identified a cohort of patients whose exercise limitation is due only to systemic oxygen extraction, due to either an intrinsic abnormality of skeletal muscle mitochondrion, limb muscle microcirculatory dysregulation, or hyperventilation and left shift the oxyhemoglobin dissociation curve” They indicate that these patients had a diagnosis of ME/CFS.

Unexplained exertional intolerance associated with impaired systemic oxygen extraction by Kathryn H Melamed, Mário Santos, Rudolf K F Oliveira, Mariana Faria Urbina, Donna Felsenstein, Alexander R Opotowsky, Aaron B Waxman, David M Systrom in Eur J Appl Physiol  Sep 6 pp 1-15 (2019)  https://doi.org/10.1007/s00421-019-04222-6 [Epub ahead of print]

 

Review abstract:

PURPOSE: The clinical investigation of exertional intolerance generally focuses on cardiopulmonary diseases, while peripheral factors are often overlooked. We hypothesize that a subset of patients exists whose predominant exercise limitation is due to abnormal systemic oxygen extraction (SOE).

METHODS: We reviewed invasive cardiopulmonary exercise test (iCPET) results of 313 consecutive patients presenting with unexplained exertional intolerance. An exercise limit due to poor SOE was defined as peak exercise (Ca-vO2)/[Hb] ≤ 0.8 and VO2max < 80% predicted in the absence of a cardiac or pulmonary mechanical limit. Those with peak (Ca-vO2)/[Hb] > 0.8, VO2max ≥ 80%, and no cardiac or pulmonary limit were considered otherwise normal. The otherwise normal group was divided into hyperventilators (HV) and normals (NL). Hyperventilation was defined as peak PaCO2 < [1.5 × HCO3 + 6].

RESULTS: Prevalence of impaired SOE as the sole cause of exertional intolerance was 12.5% (32/257). At peak exercise, poor SOE and HV had less acidemic arterial blood compared to NL (pHa = 7.39 ± 0.05 vs.

7.38 ± 0.05 vs. 7.32 ± 0.02, p < 0.001), which was explained by relative hypocapnia (PaCO2 = 29.9 ± 5.4 mmHg vs. 31.6 ± 5.4 vs. 37.5 ± 3.4, p < 0.001). For a subset of poor SOE, this relative alkalemia, also seen in mixed venous blood, was associated with a normal PvO2 nadir (28 ± 2 mmHg vs. 26 ± 4, p = 0.627) but increased SvO2 at peak exercise (44.1 ± 5.2% vs. 31.4 ± 7.0, p < 0.001).

CONCLUSIONS: We identified a cohort of patients whose exercise limitation is due only to systemic oxygen extraction, due to either an intrinsic abnormality of skeletal muscle mitochondrion, limb muscle microcirculatory dysregulation, or hyperventilation and left shift the oxyhemoglobin dissociation curve.

Read full paper 

Funded by Solve ME/CFS Foundation

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ME support group meets Montgomery 18 Sep 2019

You are invited to join people with ME and their carers for a chat and a cuppa at the Dragon Hotel, Montgomery, Powys on Wednesday 18 September 2019 between 2.30 and 3.30pm.

Contact Donna Teague beforehand to confirm the meeting is going ahead.  dateague@hotmail.co.uk

Next meeting:   16 October 2019

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Survey of the experiences of children & young people with ME for NICE

The experiences of children and young people with ME are needed to help create a new guideline for how health professionals in England and Wales diagnose and support them and their family.

If you are aged between 9 and 18 and would like to take part, please read the information below.

 

What does this involve?

This project involves taking part in a group discussion or a 1-2-1 conversation to talk about your experiences of having ME/CFS. You can do this in person, over the phone and video link. Before the discussion the research team will give you more information so you know what to expect and they will plan it so it works for you.

Who can take part?

You can take part if you:

  • live anywhere in England and Wales
  • are aged between 9 and 18 years
  • have a diagnosis of ME/CFS
  • are seeing a doctor or specialist about ME/CFS, or not – it doesn’t matter.
    If you decide to take part, a parent or adult that looks after you will also be invited to complete an online survey.

What will happen with the results?

The information provided by those that take part will be used to produce a report. This report will be used by the team updating the NICE guideline to make sure they consider the experiences of young people like you with ME/CFS.

If you are interested in taking part, please take a look at the relevant information sheet and privacy notice (this tells you how Oxford Brookes University will use your data and keep it safe) below and then contact Sophie Lawrie at Oxford Brookes on the dedicated research mobile 07741330498 or by e-mail at slawrie@brookes.ac.uk

Contacting the research team will not mean you have to take part in the study – there’s no pressure, this is up to you – and you can change your mind or withdraw at any point.

Further information

If you are aged between 9 and 15:

If you are aged between 16 and 18:

For parents:

Background:

Involving young people in the development of the NICE guideline review for ME/CFS
Action for M.E. is working with Oxford Brookes University to gather the experiences of children and young people with ME to help create a new guideline for how health professionals in England and Wales diagnose and support them and their family. In order to best meet the needs of children and young people with ME./CFS, this guideline should be representative of their voices and experiences. It is being written by the National Institute of Health and Care Excellence, and will replace the guideline being used at the moment.

How is Action for M.E. involved?

We have been working with the research team to make sure the information they share is easy to understand, and to help them find children and young people who might want to take part. We will be working to involve children and young people through the other charities in Forward-ME. We will not be involved in the focus groups or interviews, which will be delivered by the research team.

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Petition to European Parliament by Evelien Van Den Brink (Dutch) on a request for funding for biomedical research on ME

European Parliament 2019-2024   –    Committee on Petitions 30.8.2019

NOTICE TO MEMBERS

Subject: Petition No 0204/2019 by Evelien Van Den Brink (Dutch) on a request for funding for biomedical research on Myalgic Encephalomyelitis

1. Summary of petition

The petitioner refers to her poor health conditions, as she suffers from Myalgic Encephalomyelitis (ME). Such disease, sometimes called Chronic Fatigue Syndrome, is a devastating chronic disease that causes dysfunction of the neurological, immune, endocrine and metabolism systems. The petitioner states that ME affects approximately two million EU citizens, with huge economic and societal costs, thus representing a hidden public health crisis.

The petitioner calls on the European institutions to make sufficient funds available for biomedical research into ME, in order to deliver a diagnostic test, clinical trials and effective treatments for this disabling disease.

2. Admissibility

Declared admissible on 14 June 2019. Information requested from Commission under Rule 227(6).

3. Commission reply, received on 30 August 2019

Petition 0204/2019

The Commission recognises the importance of research on myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) that is diagnosed for around 24 million people worldwide, which is considered to be only 10% of the whole ME/CFS population. Although frequently triggered by infection, the cause of CFS is not yet known.

Researchers look for its source in the guts, which are inhabited by billions of microorganisms and form a complex ecosystem with profound impact on the whole body. Imbalance of gut microflora, damaged gut barrier functions and dysfunctional immune responses are known in CFS and shared with another disease – Irritable Bowel Syndrome (IBS), which frequently accompanies ME/CFS.

Horizon 2020, the EU Framework Programme for Research and Innovation (2014-2020)[1], supports research on neurological disorders of different etiology, as well as research on pain. Recently, a project Help4Me (evidence-based probiotic for Chronic Fatigue Syndrome) [2] has been funded under the SME 3 Instrument funding mechanism. Funding has been provided to develop a product GutMagnific™, an evidence-based probiotic scientifically designed and shown to be effective in correcting the gut microflora disbalance – a source of CFS and Irritable Bowel Syndrome (IBS) symptoms. The novelty of the product lies in the unique combination of five lactobacilli strains with evidence-based efficacy and shows a lifechanging promise to a severely underserved population of CFS patients.

Moreover, Horizon 2020 funds the GLORIA project [4] which is investigating the pathophysiology of chronic pain conditions including fibromyalgia, while the project RTCure [5] aims to improve diagnostics and treatment of the rheumatic and other autoimmune diseases largely associated with fatigue and pain. The current EU Framework Programme for Research and Innovation continues to provide opportunities for research funding on ME/CFS, fibromyalgia, as well as other neuro-immunological disorders, including better diagnostics and care.

One of the key elements of Horizon 2020 was the development/promotion/advancement of scientific excellence using a variety of funding schemes, including bottom-up approaches. This flexibility gives excellent science the opportunity to select the most appropriate funding mechanism. Horizon Europe [6], building upon Horizon 2020, will continue to support research in a similarly flexible manner to improve the health of European citizens.

Conclusion

Research on ME/CFS and the related diseases has received support through the EU Framework Programme for Research and Innovation and future calls will provide further opportunities to fund such research.

  1. https://ec.europa.eu/programmes/horizon2020/
  2. https://cordis.europa.eu/project/rcn/223054/factsheet/en
  3. Small and medium-sized enterprise.
  4. Understanding chronic pain and new druggable targets: Focus on glial-opioid receptor interface https://cordis.europa.eu/project/rcn/110940/factsheet/en
  5. Rheuma Tolerance for Cure   https://cordis.europa.eu/project/rcn/211964/factsheet/en
  6. https://ec.europa.eu/info/designing-next-research-and-innovation-framework-programme/what-shapes-nextframework-programme_en

Evelien’s response

Petition No 0204/2019 by Evelien Van Den Brink (Dutch) on a request for funding for biomedical research on Myalgic Encephalomyelitis Response by Evelien van den Brink to the reply of the European Commission

First of all I would like to thank the European Commission for its reply received by the Committee on Petitions on 30 August 2019. I am glad to read that the Commission recognises the importance of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and acknowledges that this is an underserved population of patients. It is encouraging to see that the Commission has recently made a start with funding research into ME by making funds available for a project aimed at correcting the gut microflora disbalance under the SME Instrument funding mechanism in April 2019.

However, as the Commission states, the cause of ME is not yet known. Imbalance of gut microflora, damaged gut barrier functions and dysfunctional immune responses are one possible hypothesis. I would like to emphasise that there are many more interesting biomedical hypotheses that deserve to be investigated. (1) This is an extremely complex disease and a structural commitment to funding biomedical research is needed, which will allow researchers to attack the problem from all possible biomedical sides. I believe equitable funding is warranted, given the large number of patients, the disease burden and the economic impact. At least 25% of ME/CFS patients are home- or bed-bound at some point in their lives. (2) Many are unemployed or have reduced productivity. (3, 4) People with ME/CFS have a lower quality of life (5) and more functional impairment (6) than those with other disabling illnesses such as multiple sclerosis, heart disease, and end-stage renal disease.

I understand that no specific projects have been funded that could lead to the development of a biomedical diagnostic test. This is however a very important part of the research into ME that could lead to a better understanding of the disease and improvements in the situation of patients. Moreover, this is now technically possible. There are many promising potential diagnostic tests under development. (7, 8)

The Commission’s response mentions that the current EU Framework Programme for Research and Innovation continues to provide opportunities for research funding on ME/CFS, fibromyalgia, as well as other neuro-immunological disorders, including better diagnostics and care. It is my understanding from various contacts with ME researchers that their grant proposals, that have been submitted since 2007, have all been turned down under these general calls, which is extremely unfortunate. Correspondence with ME researchers indicates that ME often loses out in competition with other more established diseases that are already better researched and understood. They strongly believe that more specific calls for ME, for research into the development of a biomedical diagnostic test for ME and biomedical treatments for ME, would be very helpful to advance the field.

Another option would be to include researchers with specific biomedical knowledge of ME in the general Horizon Europe grant evaluations panels. Scientifically the goals of developing a biomedical diagnostic test and biomedical treatments are achievable and yet scientists from respected ME research groups cannot access the necessary funding under Horizon 2020/Horizon Europe. This understandably leads to frustration among both scientists and patients and their families. Funding the establishment of Centres of Excellence, following the example of the NIH in the USA (9), would be an option to solve these issues successfully in a comprehensive way and provide researchers with the infrastructure they need to make headway.

I strongly believe that unless the Commission introduces specific measures to ensure funding of biomedical research into ME that properly reflects the disease burden, then the current underfunding will continue. I hope together we will be able to develop a strategy to create the best conditions under which major scientific progress will be achieved in the shortest possible time.

Thank you very much. Evelien van den Brink

  1. ME Research Summary 2019; An abbreviated summary of ME research over the past ten years. http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
  2. IOM (Institute of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press. https://www.nap.edu/read/19012/chapter/1Page 2. This figure is likely an underestimate since it does not include those undiagnosed or unable to access health care. Page 32. One study found that as many as 61% were bedbound or housebound on their worst days and that only 13% could work, some of those only part-time. Chu L (2013). US ME/CFS Patient Survey – April to May 2013. Presented at FDA Drug Development Workshop, April 25-26, 2013. http://iacfsme.org/portals/0/pdf/FDA-AugustFinalReportforUS-Version2.pdf
  3. Ibid, Page 31
  4.  EUROMENE – COST Action – is currently working on an estimate of the economic impact of ME in the EU
  5. “Health-Related Quality of Life for Patients with ME/CFS,” PLoS One, 2015
  6. Ibid, report, Page 31-32
  7. “A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).” Esfandyarpour R, et al. Proc Natl Acad Sci U S A. 2019. https://www.pnas.org/content/116/21/10250/tab-figures-data (…) we developed a nano- electronics blood-based assay that can potentially establish a diagnostic biomarker and a drug-screening platform for ME/CFS. Given the significance of this assay, we envision it has the potential to be widely employed in research laboratories and clinics in the future as an aid to physicians as well as to our colleagues in the ME/CFS research community.
  8. “The expression signature of very long non-coding RNA in myalgic encephalomyelitis/chronic fatigue syndrome.” Yang CA, et al. J Transl Med. 2018. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1600-x
  9. The National Institutes of Health (NIH) in the United States of America awarded grants to three Collaborative Research Centers (CRCs) and one Data Management Coordinating Center. https://mecfs.rti.org/research-centers/

 

Alternative link for “Response by Evelien van den Brink to the reply of the European Commission” https://www.mediafire.com/file/ez73ti02fshkb5q/bijlage_1_%286%29.pdf/file

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ACTivate your life well-being course begins Ebbw Vale, 17 Sep 2019

ACTtivate Your Life course in Ebbw Vale

a four session course that aims to teach people about stress and suffering caused by emotional issues and offers a slightly different approach to more conventional methods of dealing with emotional and physical problems.

  • Venue: Ebbw Vale Institute, Church Street, Ebbw Vale, Blaenau Gwent NP23 6BE
  • Tues 17 Sep – 8 Oct 2019    10-12 am

All courses are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

 

 

 

About the course

Classes are based on Acceptance and Commitment Therapy, and Mindfulness based practices. These psychological approaches teach people how to reduce suffering by accepting the things in life we cannot control and committing ourselves to the things we really care about. Sessions run for approximately 2 hours, once a week, with a break half way through the session. The classes are supported by PowerPoint presentations, Home Activities and Handout sheets.

Sessions cover the following four topics:

ACT 1: Getting Wise to Your Mind
ACT 2: Facing up to Life
ACT 3: Mindfulness
ACT 4: Doing What Matters

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

Check out the self help resources

NB  Some people with ME may find this course helpful, others won’t. Please check the details to ensure it is suitable for you and you are well enough to cope.

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Faecal Microbiome Transplantation (FMT) a promising treatment for CFS with IBS

A retrospective outcome study of 42 patients with Chronic Fatigue Syndrome, 30 of whom had Irritable Bowel Syndrome. Half were treated with oral approaches, and half were treated with faecal microbiome transplantation, by JN Kenyon, Shelly Coe, Hooshang Izadi in Human Microbiome Journal vol 13 August 2019 [https://doi.org/10.1016/j.humic.2019.100061]

 

Research abstract:

The gut microbiome comprises the community of microorganisms in the intestinal tract. Research suggests that an altered microbiome may play a role in a wide range of disorders including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods:
42 participants with ME/ CFS with Irritable Bowel Syndrome (IBS) were allocated into one of two groups, 21 were treated with standard oral approaches, which centred around various nutritional remedies, probiotics, prebiotics, dietary advice and lifestyle advice. The second group who had mostly failed using oral approaches, were treated with Faecal Microbiome Transplantation (FMT). Each patient received 10 Implants, each from a different screened donor, and the Implants were processed under anaerobic conditions. The transplant is delivered via a paediatric rectal catheter, which is inserted through the anus to reach the lower part of the sigmoid colon.

The results were assessed on a percentage basis before and after treatment, 0% being no improvement, 100% being maximum improvement. An exact non-parametric Mann-Whitney (one-tailed) test was used to compare medians from those on FMT compared with those receiving oral approaches only. On clinical experience over many years, the only way to judge improvement in Chronic Fatigue Syndrome as there is no test for Chronic Fatigue Syndrome, is my clinical assessment.

Results:
The median for the FMT group was found to be significantly higher compared to the oral treatment group (Mann-Whitney U=111.5, p=.003). Therefore, the FMT group improved to a greater extent (z=-2.761).

Conclusion:
This study shows that FMT is a safe and a promising treatment for CFS associated with IBS. Adequately powered randomised controlled trials should be carried out to assess the effectiveness of FMT in patients with CFS and IBS.

The First ME/CFS Fecal Transplant Study Suggests the Treatment Holds Promise

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How best to advance ME/CFS research

Responses to Request for Information: Soliciting Input on How Best to Advance Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research in the National Institute of Neurological Disorders and Stroke blog, USA, 20 Aug 2019

Purpose:

In 2018 the National Institute of Neurological Disorders and Stroke (NINDS) formed a Working Group of the National Advisory Neurological Disorders and Stroke (NANDS) Council focused on how best to advance research on myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS).

The Working Group, composed of scientists, clinicians, representatives from non-governmental organizations (NGOs), and individuals with ME/CFS, is charged with:

  1. identifying gaps and opportunities in ME/CFS research,
  2. considering unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators, and
  3. identifying potential approaches to enhance ongoing research collaboration and communication between NGOs, individuals with ME/CFS, researchers, and federal agencies that support research in ME/CFS.

The NANDS Council Working Group for ME/CFS issued a Request for Information (RFI) (NOT-NS-19-045) to gather input on approaches and strategies and help inform discussions of how to advance research on ME/CFS. The RFI was open for responses from March 15th, 2019 until May 1st, 2019. Follow the links below to read responses to each area of the RFI.

Personally identifiable information within the responses has been redacted, as indicated by […]. Names of healthcare providers, researchers and representatives from patient organizations remain. Please note that some responses include links to outside websites. The NINDS cannot attest to the accuracy of the content on a non-federal site. Linking to a non-federal site does not constitute an endorsement of that site by the NINDS or NIH.

RFI Responses:

e.g.  To be biomedical – and based on appropriate data sets clearly identifying people with the illness and its severity. Not spin off from other conditions. It needs to focus on the lack of energy, inflammation and PEM as the key defining features of ME.

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Inflammatory proteins are altered in CFS

Inflammatory proteins are altered in chronic fatigue syndrome – a systematic review and meta-analysis, by Rebecca Strawbridge, Maria-Laura Sartor, Fraser Scott, Anthony J Cleare in Neuroscience & Biobehavioral Reviews, August 26, 2019 [https://doi.org/10.1016/j.neubiorev.2019.08.011]

 

Highlights:

  • 42 studies meta-analysed, testing 20 proteins between patients with CFS and controls
  • Patients had higher levels of 5 cytokines than controls (TNF, IL-2, IL-4, TGFb, CRP)
  • Group differences were not significant for 12 proteins
  • Results are heterogeneous but provide some support for an inflammatory role in CFS

Review abstract:

Immune dysfunction has been posited as a key element in the aetiology of chronic fatigue syndrome (CFS) since the illness was first conceived.  However, systematic reviews have yet to quantitatively synthesise inflammatory biomarkers across the literature.

We undertook a systematic review and meta-analysis to quantify available data on circulating inflammatory proteins, examining studies recruiting patients with a CFS diagnosis and a non-affected control group.

Results were meta-analysed from 42 studies. Patients with CFS had significantly elevated tumour necrosis factor (ES = 0.274, p < 0.001), interleukin-2 (ES = 0.203, p = 0.006), interleukin-4 (ES = 0.373, p = 0.004), transforming growth factor-β (ES = 0.967, p < 0.001) and c-reactive protein (ES = 0.622, p = 0.019). 12 proteins did not differ between groups.

These data provide some support for an inflammatory component in CFS, although inconsistency of results indicates that inflammation is unlikely to be a primary feature in all those suffering from this disorder. It is hoped that further work will elucidate whether there are subgroups of patients with clinically-relevant inflammatory dysfunction, and whether inflammatory cytokines may provide a prognostic biomarker or moderate treatment effects.

Read full paper

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Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: A scoping review

Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: a scoping review, by Sarah S Collard, Jane Murphy in Journal of Child Health Care, 4 Aug 2019 [https://doi.org/10.1177/1367493519864747]

Review abstract:

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) negatively impacts the quality of life for children with the condition. Although up to 2% of children have CFS/ME, the bulk of research investigates adults with CFS/ME. Using the PRISMA extension for a scoping review and the work of Arksey and O’Malley (2005), a scoping review was conducted of all relevant peer-reviewed research investigating nutrition, exercise, and psychosocial factors within a pediatric population diagnosed with CFS/ME.

Key themes found were nutrition and dietary components, exercise therapy, psychosocial factors, and multifaceted treatment. Nutrition was explored on its own as a tool to decrease symptoms; however, there were very few studies found to examine nutritional deficiency or treatment with those under the age of 18.

Graded exercise and resistance training improved fatigue severity and symptoms of depression in adolescents with CFS/ME. Research exploring psychosocial factors of CFS/ME presented attributes that could lead to being diagnosed as well as barriers to treatment. The multifaceted treatment undertaken typically consists of graded activities/exercise, cognitive behavioral therapy, nutritional advice, and family sessions. This has shown to increase school attendance and decrease the severity of the fatigue for adolescents.

Minimal literature exploring CFS/ME within a prepubescent population presents the need for further research.

 

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Brain responses in CFS & TMD to autonomic challenges

Brain responses in CFS and TMD to autonomic challenges: an exploratory fMRI study, by QC Vuong, JR Allison, A Finkelmeyer, J Newton, J Durham in JDR Clinical & Translational Research, August 28, 2019

 

Research abstract:

Introduction:
Dysfunction of the autonomic nervous system (ANS) is seen in chronic fatigue syndrome (CFS) and temporomandibular disorders (TMDs). Both conditions have poorly understood pathophysiology. Several brain structures that play a role in pain and fatigue, such as the insular cortex and basal ganglia, are also implicated in autonomic function.

Objectives:
ANS dysfunction may point to common neurophysiologic mechanisms underlying the predominant symptoms for CFS and TMD. No studies to date have investigated the combination of both conditions. Thus, our aim was to test whether patients with CFS with or without TMD show differences in brain responses to autonomic challenges.

Methods:
In this exploratory functional imaging study, patients with CFS who screened positive for TMD (n = 26), patients who screened negative for TMD (n = 16), and age-matched control participants (n = 10) performed the Valsalva maneuver while in a 3-T magnetic resonance imaging scanner. This maneuver is known to activate the ANS.

Results:
For all 3 groups, whole-brain F test showed increased brain activation during the maneuver in the superior and inferior frontal gyri, the left and right putamen and thalamus, and the insular cortex. Furthermore, group contrasts with small-volume correction showed that patients with CFS who screened positive for TMD showed greater activity in the left insular cortex as compared with patients who screened negative and in the left caudate nucleus as compared with controls.

Conclusion:
Our results suggest that increased activity in the cortical and subcortical regions observed during autonomic challenges may be modulated by fatigue and pain. ANS dysfunction may be a contributing factor to these findings, and further work is required to tease apart the complex relationship among CFS, TMD, and autonomic functions.

Knowledge Transfer Statement:
Brain activity related to activation of the autonomic nervous system in patients with chronic fatigue syndrome who screened positive for painful temporomandibular disorder was greater than in patients who screened negative; activity was seen in brain regions associated with autonomic functions and pain. These findings suggest that autonomic dysfunction may play a role in the pathophysiology of both conditions, explain some of the apparent comorbidity between them, and offer avenues to help with treatment.

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