Help secure the World Health Organisation’s classification of ME & CFS

Posted on 04/21/2017 by wames

ME action blog post: Help secure the World Health Organisation’s classification of ME & CFS

Important call to action! We need all hands on deck for a simple, but important task.

The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition.

Suzy Chapman & Mary Dimmock have been working tirelessly on this issue, and they need our help. They need people to go into the ICD system and agree with their proposal and/or make a comment. Read their full proposal here.

Chapman and Dimmock recommend that the disease be listed as Myalgic Encephalomyelitis and Chronic Fatigue Syndrome for the “concept titles” for the disease. (The disease was previously indexed as “Benign Myalgic Encephalomyelitis” and “Postviral Fatigue Syndrome.” The recommendation is to change those titles since the disease is not benign, and not all cases are postviral. Postviral Fatigue Syndrome will be listed as a synonym of the disease.)

It’s also being recommended that ME and CFS  be retained under Chapter 08: “Diseases of the nervous system” and “Other disorders of the nervous system.”

The ICD-10 first came into use in 1994, with countries gradually adopting it over time. (The U.S. adopted the ICD-10 in 2015). It is only now being updated to the ICD-11, which means that the classifications for ME and CFS in ICD-11 will last a long time. It’s crucial that we take action now!

The deadline for comments on the ICD-11 is not yet clear but the sooner we submit our comments, the better to ensure that ME and CFS are properly classified in the new edition.

Follow these steps to show support for the classification:
1. Register at this link.

(Note: you may find that you can’t complete the registration form without naming an organisation to which you belong. You could consider registering as a #MEAction member or as member of a Facebook group.)

If you are having problems negotiating the registration page, check out short WHO tutorial.

2. Click on this link to see the proposal.

3. Scroll down through the proposal to the bottom where you’ll see: “Agree” and “Disagree” buttons.

Click “Agree.”

4. There is also an “Add comment” button, where you can add a comment. You’ll see comments from other people there. While it is not essential to add a comment, it is a good idea as some of the “Agrees” have disappeared from the system (there may be a bug in the form; no comments have disappeared). Adding a simple comment like, “I agree with this proposal,” will ensure that your support remains visible.

If you would like to make a more elaborate comment, the following are key points from the proposal, which you could use:

  • These three terms should continue to be classified in the neurological chapter, as was done in ICD-10, until such time that research provides the evidence to support a more appropriate classification.
  • The term “postviral fatigue syndrome” should be removed as the lead term because not all cases are postviral. Instead, the terms “chronic fatigue syndrome” and “myalgic encephalomyelitis” should be elevated to concept titles, each with their own separate code. This is necessary for correct disease tracking and for accurate population statistics.
  • The ICD-10 term “benign myalgic encephalomyelitis” should be modified to “myalgic encephalomyelitis” as the disease is not benign.
    Reciprocal exclusions should be added between these three terms and the word “fatigue” (as was done in ICD-10) and also between these terms and bodily distress disorder.
  • These terms should not be classified and/or dual parented in either the symptoms chapter or the mental health chapter in the ICD 11 Handbook.

5. Send this information to your local ME/CFS organisation, and ask them to support the proposal. – WAMES will be supporting.

Mary & Suzy also suggest:

  • If you are commenting on behalf of an organisation, please indicate the organisation’s name in your comment.
  • You won’t be able to edit, add additional content, or delete your comment once it has been submitted ‒ so you may want to prepare a draft, and copy and paste it into the field.
  • You can include references to papers, reports, etc. in support of your comments but you won’t be able to upload files.
  • At the moment, it is not clear by what date comments on proposals will need to be in by in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. The sooner, the better.

To receive updates on Suzy & Mary’s proposal, follow Suzy’s Twitter account: @dxrevisionwatch

For queries, email Mary or Suzy at:
Mary Dimmock: medimmock@gmail.com
Suzy Chapman: dxrevisionwatch@page1.myzen.co.uk

Posted in News | Tagged , , , , | 1 Comment

Migraine summit & CFS & FM

Posted on 04/13/2017 by wames

Health rising forum post, by Cort Johnson, 11 April 2017: Migraine Summit Poses Opportunities For Fibromyalgia and Chronic Fatigue Syndrome Patients

A Different Kind of Summit

Online Health Summits have become something of a big deal over the past couple of years. They provide patients free access (if they watch them each day) to ideas and therapies they might not have. They’ve also become somewhat predictable in their lineups of alternative health MD’s and practitioners.
The “Worldwide Migraine Summit” from April 23rd-29th is different. It’s got some alternative health practitioners but it’s also packed with doctors from prestigious institutions such as the Mayo Clinic, the Cleveland Clinic, UCLA and the Harvard Medical School. Eleven neurologists and four directors of University Departments are speaking.

With support from major non-profit groups such as The American Migraine Foundation, the National Headache Foundation and The Migraine Trust, this Summit is different indeed.

The lead talk on the “Top Ten Myths of Migraine” by a Professor of Neurology will almost explode the myth that migraine is rare. The 2013 Global Burden of Disease Study found that migraine was the sixth highest cause worldwide of years lost due to disability (YLD). Over 36 million Americans are effected. About 15% of women and 6% of men are believed to suffer from migraine and that number goes up considerably for fibromyalgia and chronic fatigue syndrome.

The Fibromyalgia, Chronic Fatigue Syndrome, Migraine Connection

A large Spanish study found that over 50% of fibromyalgia (FM) patients met the criteria for migraine – and many of them likely had no idea that they had this affliction. (More FM patients met the criteria for migraine than for chronic fatigue syndrome.) The penalty for having fibromyalgia and migraine was a harsh one as well which included significantly increased risks of also having chronic fatigue syndrome (ME/CFS) and depression as well as hypertension (p<.004), asthma (p<.01), irritable bowel syndrome (p<.02), and PTSD (p<.005).

Dr. Baraniuk, a chronic fatigue syndrome (ME/CFS), Gulf War Illness and FM researcher believes similar brain issues may underlie all these diseases. Baraniuk has even used migraine medications successfully in ME/CFS patients who don’t have migraines.

Other doctors have found treatments used for migraine helpful in ME/CFS/FM as well. Dr. Katherine Downing-Orr and Dr Goldstein before her, uses nimodipine, a calcium channel blocker often used for migraine relief, in her treatment protocol for ME/CFS. Dr. Teitelbaum uses magnesium, a popular supplement in FM and ME/CFS, to help his patients with migraines.

Read more about the summit

Posted in News | Tagged , , , , | Comments Off on Migraine summit & CFS & FM

An Acceptance and Commitment Therapy (ACT) intervention for CFS

Posted on 04/12/2017 by wames

Research abstract:

An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS): A case series approach, by Lauren Roche, David L Dawson, Nima G Moghaddam, Anne Abey in Journal of Contextual Behavioral Science [Published online April 8, 2017]

Objective:
Acceptance and Commitment Therapy (ACT) has been shown to improve the  psychological well-being of individuals suffering from a range of chronic health conditions, and aims to increase psychological flexibility in order to foster greater engagement in personally meaningful behavior. We aimed to assess whether the approach (delivered via guided bibliotherapy) may have utility for individuals experiencing the debilitating effects of Chronic Fatigue Syndrome (CFS).

Methods:
We used a mixed-methods multiple single-case design to explore the effects of a six week self-help ACT intervention for six participants diagnosed with CFS.

Results:
Significant increases in ratings of valued living were replicated and maintained in four participants, with qualitative data further highlighting the importance of the values component of the intervention.

Acceptance scores improved in four participants but were not maintained at follow-up, whereas improvements in psychological flexibility were observed and maintained for three participants. All participants wearing an activity monitor evinced increased physical activity post intervention, which was maintained at follow up in half of the participants.

Conclusion:
The ACT self-help intervention appeared to benefit most participants on at least one assessed metric, particularly in terms of the promotion and pursuit of individual values, and increased physical activity. However, the results suggest these benefits may be difficult to maintain longer term without further input.

Highlights:

  • Acceptance and Commitment Therapy can improve wellbeing in chronic health conditions
  • Chronic Fatigue Syndrome is a debilitating and challenging chronic syndrome
  • We examine guided ACT self-help in a case-series of individuals with CFS
  • ACT was linked with increased physical activity and valued behaviour
  • Across cases, evidence for effects on psychological flexibility was mixed
Posted in News | Tagged , , , , , | Comments Off on An Acceptance and Commitment Therapy (ACT) intervention for CFS

Central nervous system findings in CFS

Posted on 04/12/2017 by wames

Review abstract:

CNS findings in chronic fatigue syndrome and a neuropathological case report
Kimberly Ferrero, Mitchell Silver, Alan Cocchetto, Eliezer Masliah, Dianne Langford in Journal of Investigative Medicine Vol 65 Issue 4 [published 6 April 2017]

Chronic fatigue syndrome (CFS) is characterized as a persistent, debilitating complex disorder of unknown etiology, whereby patients suffer from extreme fatigue, which often presents with symptoms that include chronic pain, depression, weakness, mood disturbances, and neuropsychological impairment.

In this mini review and case report, we address central nervous system (CNS) involvement of CFS and present neuropathological autopsy findings from a patient who died with a prior diagnosis of CFS.

Among the most remarkable pathological features of the case are focal areas of white matter loss, neurite beading, and neuritic pathology of axons in the white matter with axonal spheroids. Atypical neurons displaying aberrant sprouting processes in response to injury are observed throughout cortical gray and white matter.

Abundant amyloid deposits identical to AD plaques with accompanying intracellular granular structures are observed as well. Neurofibrillary tangles are also present in the white matter of the frontal cortex, thalamus and basal ganglia.

Taken together, these neuropathological findings warrant further studies into CNS disease associated with CFS.

Posted in News | Tagged , , , , , , , , | Comments Off on Central nervous system findings in CFS

Dr Shepherd says ‘It’s time for an independent review of the PACE Trial methods & results’

Posted on 04/11/2017 by wames

Article abstract:

PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results, by Charles Bernard Shepherd in Journal of Health Psychology, 10 April 2017

The PACE trial set out to discover whether cognitive behaviour therapy and graded exercise therapy are safe and effective forms of treatment for myalgic encephalomyelitis/ chronic fatigue syndrome.

It concluded that these interventions could even result in recovery. However, patient evidence has repeatedly found that cognitive behaviour therapy is ineffective and graded exercise therapy can make the condition worse.

The PACE trial methodology has been heavily criticised by clinicians, academics and patients. A re-analysis of the data has cast serious doubts on the recovery rates being claimed. The trust of patients has been lost. The medical profession must start listening to people with myalgic encephalomyelitis/chronic fatigue syndrome if trust is going to be restored.

Excerpt:

First, on behalf of all the journals that have so far published 16 papers from the trial, The Lancet must now set up an independent re-analysis of the PACE trial data, along with appropriate sensitivity analysis. This re-analysis should be carried out by well respected independent reviewers with expertise in statistics and study design. If any results are found to be significantly inaccurate or unreliable, the possibility of a retraction will have to be considered.

Second, if a drug treatment was found to be making a significant proportion of people worse, as is the case with patient evidence relating to the use of GET, the treatment would be withdrawn and would not form part of a NICE recommendation. As there is now both consistent and extensive patient evidence relating to the harmful effects of GET, the NICE guideline recommendation on GET must be reviewed as a matter of urgency. The generic prescribing of progressive and inflexible exercise programmes is not an acceptable form of treatment for people with ME/CFS.

Third, the enormous amount of public money spent by the Medical Research Council and Department of Work and Pensions on funding the PACE trial, along with legal costs met by Queen Mary University of London in appealing against the Freedom of Information requests, merits a formal inquiry, possibly at a parliamentary level.

Finally, there is a desperate need for clinical trials of activity management that examine the heterogeneity of ME/CFS, the fact that underlying disease processes involve both central and peripheral fatigue, and the consistent evidence from patients that inflexible or progressive exercise programmes aggravate symptoms in the majority of patients who come under the ME/CFS umbrella.

Read the full article

Link to other articles on the PACE trial in the Journal of Health Psychology:

PACE team response shows a disregard for the principles of science (Professor Jonathan Edwards)

The problem of bias in behavioural intervention studies: Lessons from the PACE trial (Carolyn Wilshire)

Do graded activity therapies cause harm in chronic fatigue syndrome? (Tom Kindlon)

Investigator bias and the PACE trial (Steven Lubet)

How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? (Dr Luis Nacul et al from the UK ME/CFS Biobank)

The PACE trial missteps on pacing and patient selection (Professor Leonard A Jason)

Response to the editorial by Dr Geraghty (Professor Peter D White, Professor Trudie Chalder, Professor Michael Sharpe et al)

Posted in News | Tagged , , , , , , , | Comments Off on Dr Shepherd says ‘It’s time for an independent review of the PACE Trial methods & results’

Peterson’s atypical subset opens new view of ME/CFS

Posted on 04/10/2017 by wames

Simmaron research blog post, by Cort Johnson, 5 April 2017: Peterson’s Atypical Subset Opens New View of ME/CFS in Columbia/Simmaron Publication

“We now have biological evidence that the triggers for ME/CFS may involve distinct pathways to disease, or, in some cases, predispose individuals to the later development of serious comorbidities.” Dr. Mady Hornig.

The Subset Makers

Over the past couple of years the Simmaron Research Foundation and Center for Infection and Immunity at Columbia University and others have begun to pump out some long awaited subsets. This week, new findings were published by Columbia and Simmaron that define 2 subsets.

They’re not the usual suspects (infectious trigger vs non-infectious trigger; gradual onset vs acute onset). In fact, they involve subsets few would have predicted a couple of years ago. They suggest that we might be in for some real surprises over time.

Short Duration vs Long Duration Subset: Two years ago, the Simmaron Research Foundation collaborated with Ian Lipkin and other doctors to uncover a subset few had anticipated: short duration patients vs long duration patients.

The Atypical Patient or “Peterson Subset”:  Now comes a subset of atypical chronic fatigue syndrome (ME/CFS) patients (the “Peterson Subset”) that Dr. Peterson had long wondered about. These patients had ME/CFS but tended to follow a different course. Some had had unusual exposures (unusual infections, blood transfusions); others developed serious illnesses (cancer, autoimmune diseases, etc.) that Dr. Peterson didn’t see in the rest of the population.

Dr. Hornig talked about how the atypical subset came about. Like so many breakthroughs in medicine it took a careful and observant doctor/researcher to bring it about. This study, she said, was a testament to:

“Dr. Peterson’s clinical acumen, his long-term follow up of this patient population and his attentiveness to the full range of complex, serious medical disorders that might develop. The classical group had been followed for similar lengths of time but had not developed these more severe, serious comorbidities.”

The atypical vs classical distinction was pre-established by Dr. Peterson before the analysis. Based on his wide-ranging clinical experience, the atypical group stood out for either: 1) the presence of unusual precursors (triggers) of ME/CFS or; 2) the development of more unusual and severe comorbidities over varying (and often long-term) intervals after ME/CFS onset.”

Dr. Peterson felt the unusual outcomes weren’t just the result of chance: something different was going on – something that he felt as a doctor needed to be identified. What if, he thought, there was a way to identify these unusual patients before they started developing these significant illnesses. Then he could do more extensive cancer or immune screens and watch these patients more closely.

Plus, these patients could be inadvertently bollixing up the results of ME/CFS studies. Peterson was so sure, in fact, this subset was different that he had its effects assessed during the first Simmaron/CII spinal fluid study. Peterson turned out to be right: the atypical subset had such an effect on the results that it had to be removed.

The next step was a study comparing the two groups. Using Dr. Peterson’s spinal fluid samples, The Center for Infection and Immunity (CII) at Columbia found that “Peterson Subset” not only had markedly different immune findings but displayed a different pattern of immune results as well. Dr. Peterson is Scientific Advisor to Simmaron and Gunnar Gottschalk was its Research Manager.

Immune network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome with atypical and classical presentations M Hornig1,2, CG Gottschalk3, ML Eddy1, X Che1, JE Ukaigwe1, DL Peterson3 and WI Lipkin. Translational Psychiatry (2017) 7, e1080; doi:10.1038/tp.2017.44; published online 4 April 2017

Read the full article for more info about the atypical subset and the next steps for the researchers.

…Subsets are common in neurological diseases.

Nor is this study’s general finding – that atypical patients can be differentiated from typical patients in ME/CFS – unusual in the neuroscience field.  Virtually every neurological disease… appears to be studded with subsets. Different types of multiple sclerosis, for instance, have been identified using similar kinds of spinal fluid analyses.

Participate in Simmaron Research’s poll, at the foot of the article: Do You Have Typical Or Atypical ME/CFS?

See also: Scientists discover biological evidence of 2 subgroups in ME/CFS

Posted in News | Tagged , , , , , , , , | Comments Off on Peterson’s atypical subset opens new view of ME/CFS

Welsh health watchdog monitors websites selling medicine

Posted on 04/07/2017 by wames

BBC news Wales article, 6 April 2017: Websites selling medicine looked at by health watchdog

Two websites selling prescription medicines are having their registrations looked at by the Welsh health watchdog, the BBC has learned.

Gender GP, an online transgender clinic, and My Web Doctor have applied for registration with Healthcare Inspectorate Wales (HIW).

They are run by Abergavenny-based NHS GP Dr Helen Webberley.

The Welsh Government said all private clinics with a base in Wales must be registered.

HIW said it could not comment on any ongoing cases involving unregistered providers.

A number of websites selling prescription medicines have been reprimanded by the health watchdog in England – the Care Quality Commission (CQC) – after potentially putting patients at risk of harm.

One company has been suspended and another two have had conditions imposed on their registration.

Last month the CQC issued the first clear guidance on the standards it expects from websites selling prescription medications online.

One company, Doctor Matt Ltd, had its registration suspended for six months when the regulator found medications were being prescribed after a patient’s application was assessed in only 17 seconds.

The Royal Pharmaceutical Society has warned that regulators outside England need to adopt the same guidelines for inspection to make sure patients are not being put at risk.

Read more

WAMES recommends that you check out an online pharmacy carefully before use, to ensure you are getting a safe service.

Posted in News | Tagged , | Comments Off on Welsh health watchdog monitors websites selling medicine

Review of acupuncture & moxibustion as treatments for CFS

Posted on 04/07/2017 by wames

Review abstract:

Acupuncture and moxibustion for chronic fatigue syndrome in traditional Chinese medicine: a systematic review and meta-analysis, by Taiwu Wang, Cong Xu, Keli Pan and Hongyan Xiong in BMC Complementary and Alternative Medicine (open access) 2017 17:163  [Published online 23 March 2017]

BACKGROUND:
As the etiology of chronic fatigue syndrome (CFS) is unclear and the treatment is still a big issue. There exists a wide range of literature about acupuncture and moxibustion (AM) for CFS in traditional Chinese medicine (TCM). But there are certain doubts as well in the effectiveness of its treatment due to the lack of a comprehensive and evidence-based medical proof to dispel the misgivings.

Current study evaluated systematically the effectiveness of acupuncture and moxibustion treatments on CFS, and clarified the difference among them and Chinese herbal medicine, western medicine and sham-acupuncture.

METHODS:

We comprehensively reviewed literature including PubMed, EMBASE, Cochrane library, CBM (Chinese Biomedical Literature Database) and CNKI (China National Knowledge Infrastructure) up to May 2016, for RCT clinical research on CFS treated by acupuncture and moxibustion. Traditional direct meta-analysis was adopted to analyze the difference between AM and other treatments. Analysis was performed based on the treatment in experiment and control groups. Network meta-analysis was adopted to make comprehensive comparisons between any two kinds of treatments. The primary outcome was total effective rate, while relative risks (RR) and 95% confidence intervals (CI) were used as the final pooled statistics.

RESULTS:

A total of 31 randomized controlled trials (RCTs) were enrolled in analyses. In traditional direct meta-analysis, we found that in comparison to Chinese herbal medicine, CbAM (combined acupuncture and moxibustion, which meant two or more types of acupuncture and moxibustion were adopted) had a higher total effective rate (RR (95% CI), 1.17 (1.09 ~ 1.25)).

Compared with Chinese herbal medicine, western medicine and sham-acupuncture, SAM (single acupuncture or single moxibustion) had a higher total effective rate, with RR (95% CI) of 1.22 (1.14 ~ 1.30), 1.51 (1.31–1.74), 5.90 (3.64–9.56). In addition, compared with SAM, CbAM had a higher total effective rate (RR (95% CI), 1.23 (1.12 ~ 1.36)).

In network meta-analyses, similar results were recorded. Subsequently, we ranked all treatments from high to low effective rate and the order was CbAM, SAM, Chinese herbal medicine, western medicine and sham-acupuncture.

CONCLUSIONS

In the treatment of CFS, combined acupuncture and moxibustion (CbAM) and single acupuncture or single moxibustion (SAM) may have better effect than other treatments. However, the included trials have relatively poor quality, hence high quality studies are needed to confirm our finding.

Posted in News | Tagged , , , , , | Comments Off on Review of acupuncture & moxibustion as treatments for CFS

Exploring the experiences & occupations of men with CFS/ME

Posted on 04/06/2017 by wames

Thesis abstract:

Exploring the experiences and occupations of men with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) using a gadamerian interpretive phenomenological framework, by Anne Johnson, 2107 University of the West of England Phd thesis [Online March 31, 2017]

Background:
Chronic fatigue syndrome (CFS) known interchangeably as myalgic encephalomyelitis or encephalomyelopathy (ME) is a contentious and often misunderstood condition of unknown cause. Associated symptoms may fluctuate and include post exertional mental and physical fatigue, sleep disturbance, generalised aches and pains and for some, hypersensitivities to alcohol, light and noise.

The impact of having CFS/ME can result in disruption to all aspects of day to day life for children and adults regardless of ethnicity or socioeconomic factors. In adults, it is estimated that population prevalence is 0.2-0.4% which is higher than in children and that women are affected by the condition more than men by a ratio of 3:1.

The vast majority of the literature linked to living with CFS/ME focuses on the experiences of women with the condition and as a consequence, there is a dearth of literature reporting on the experiences of men. Additionally, men with CFS/ME are considered as difficult to recruit in terms of research participation.

Objective:
The focus of this study was to explore the experiences of men living with CFS/ME and its impact on their day to day lives and occupations.

Design:
A qualitative design was employed underpinned by interpretive phenomenology. Eight men aged between 21 and 68 years old were recruited with a clinically confirmed diagnosis of CFS/ME and interviewed up to four times. Rich data were generated through dialogue, poetry and artworks. Interpretations were made using the hermeneutic work of Gadamer (2004) as a philosophical framework.

Analysis:
Thematic analysis was employed. Unique and shared experiences were identified from the data. Shared findings were synthesised into three themes to reflect the temporally situated nature of the men’s experiences.

Findings:
The findings illustrate that existentialist notions of ‘being-in-the-world’ were significantly disrupted by the presence of CFS/ME. Additionally, the occupational dimension of ‘being-in-the-world’ referred to as ‘doing’ and notions of ‘belonging’ and ‘becoming’ were also disrupted. How CFS/ME impacted upon individual risks to survival and health was also elicited.

Conclusions:
New knowledge was generated to add to the body of work linked to the impact of CFS/ME on the lives and occupations of men with the condition. A unique way of knowing about the meaning of occupation was also gained through fusing philosophical and occupational orientations/frameworks to inform occupational therapy practice and the occupational science literature.

The importance of considering the men’s ‘being-in-the-world’ was emphasised in order to understand their ‘doing’ as a dimension of ‘being’ and their subsequent ‘belonging’ and ‘becoming’. Uniquely, notions of ‘traumatised being’, associated with potentially life threatening causes of fatigue, and ’emasculated being’ were experienced by some of the men and the importance of an awareness of these concepts is addressed in terms of occupational therapists facilitating survival, well-being and ‘harmonious health’ for men with CFS/ME.

[patient stories are contained in chapter 5]

Posted in News | Tagged , , , , | Comments Off on Exploring the experiences & occupations of men with CFS/ME

TV programme highlights Restless Legs Syndrome

Posted on 04/05/2017 by wames

Restless legs syndrome is a condition some people with ME and FM experience.

Channel 5 broadcast a programme on 4 April 2017 which is available on My5 until 4 April 2018: Restless Legs Syndrome: Desperate for Help 

NHS Wales Direct article:

Restless legs syndrome, also known as Willis-Ekbom disease, is a common condition of the nervous system that causes an overwhelming, irresistible urge to move the legs.

It can also cause an unpleasant crawling or creeping sensation in the feet, calves and thighs. The sensation is often worse in the evening or at night. Occasionally, the arms are affected too.

Restless legs syndrome is also associated with involuntary jerking of the legs and arms, known as periodic limb movements in sleep (PLMS).

Some people have the symptoms of restless legs syndrome occasionally, while others have them every day. The symptoms can vary from mild to severe. In severe cases, restless legs syndrome can be very distressing and disrupt a person’s daily activities.

Read more

RLS-UK is a charity that supports people living with Restless Legs Syndrome (RLS)

Posted in News | Tagged , , , , , , | Comments Off on TV programme highlights Restless Legs Syndrome