WAMES writes to NICE

Posted on 08/18/2021 by wames

WAMES writes to NICE about publication delays

 

The shock of yesterday’s announcement from NICE, ‘pausing’ publication of the ME/CFS guideline, was followed up this morning when there was still no announcement about what was to happen next. Are they rewriting the rule book as I type?

Since the beginning of 2018 stakeholders of all types (medical & health professionals, governments and health commissioners, charities, peer support groups, individuals and their families) have all submitted  &/or discussed evidence of need and research results, experiences and questions. The final guideline was agreed weeks ago and had been proofread. Some disagreed and left the committee, not entirely surprising. Before the last guideline was published, some patient groups refused to sign up to the guideline.

A call for 50 stories of harm caused by GET was originally said to be issued by NICE, but it now appears to be from people preparing to fight back, should NICE reverse the decision to recommend against GET and CBT as first line treatments. If you wish to contribute your story send it to jan@wames.org.uk and I will pass it on.

Many charities, medics and individuals are speaking out on the media and we include some links at the end. WAMES however felt motivated, on all our behalf, to tell NICE some of what we felt and thought (although to be honest there are more questions than anything.)

Dear Ms Stafford,

We were shocked to receive notification that the publication of the ME/CFS NICE guidelines will be postponed yet again. At such short notice and with no information on what happens next!

We are aware that NICE has rules and regulations governing the production of guidelines and we would be grateful if you could let us know which of these applies in this circumstance.  It would also help us, as stakeholders, to know what rules and regulations will apply if further consultation is pursued.

We are keen that all the time and energy WAMES, individual patients and other groups have contributed to the production of these guidelines, will not go to waste.

Patients in Wales have suffered from poor treatment, lack of diagnosis and a small number of inappropriate services for far too long. We desperately need an authoritative source that the Welsh NHS can use to improve services, but if there is a credible challenge to the final guideline then we hope that there will be full opportunity for us as stakeholders to examine that challenge in detail, within the rules.  We also hope that NICE will once again offer all stakeholders, whether in the health service, charity sector or individual patients, fair representation.

One major concern is that there will be further loss of confidence in healthcare professionals. Patients are wondering if they will ever be able to trust them to follow the scientific evidence and listen to their patients. We really hope that NICE is NOT considering modifying the guideline so some clinics can continue to provide a loosely defined diagnosis and clinics that offer potentially harmful services with no evidence base.

We look forward to hearing the full details and a time schedule as soon as possible.

Jan Russell Chair, WAMES

Read other responses to the announcement

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Research review: Redox imbalance links COVID-19 & ME/CFS

Posted on 08/18/2021 by wames

Redox imbalance links COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome, by Bindu D Paul, Marian D Lemle, Anthony L Komaroff, Solomon H Snyder in PNAS August 24,  2021 118 (34); [doi.org/10.1073/pnas.2024358118]

 

Review abstract:

Although most patients recover from acute COVID-19, some experience postacute sequelae of severe acute respiratory syndrome coronavirus 2 infection (PASC). One subgroup of PASC is a syndrome called “long COVID-19,” reminiscent of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS is a debilitating condition, often triggered by viral and bacterial infections, leading to years-long debilitating symptoms including profound fatigue, postexertional malaise, unrefreshing sleep, cognitive deficits, and orthostatic intolerance. Some are skeptical that either ME/CFS or long COVID-19 involves underlying biological abnormalities.

However, in this review, we we summarize the evidence that people with acute COVID-19 and with ME/CFS have biological abnormalities including redox imbalance, systemic inflammation and neuroinflammation, an impaired ability to generate adenosine triphosphate, and a general hypometabolic state.

 

Redox biology refers to low levels of ROS that activate signaling pathways to initiate biological processes while oxidative stress denotes high levels of ROS that incur damage to DNA, protein or lipids. Schieber & Chandel

These phenomena have not yet been well studied in people with long COVID-19, and each of them has been reported in other diseases as well, particularly neurological diseases.

We also examine the bidirectional relationship between redox imbalance, inflammation, energy metabolic deficits, and a hypometabolic state. We speculate as to what may be causing these abnormalities. Thus, understanding the molecular underpinnings of both PASC and ME/CFS may lead to the development of novel therapeutics.

 

Comments:

News-medical.net: Review highlights similarities between long COVID and chronic fatigue syndrome, by Emily Henderson   26 Aug 2021

John Hopkins: For many, long COVID looks a lot like chronic fatigue  25 Aug 2021

Health Rising: Could a Free Radical Explosion Be Causing ME/CFS and Long COVID?, by Cort Johnson   21 Aug 2021

Solve ME: Newly published research connects ME/CFS and COVID-19,  26 Aug 2021

A comprehensive review of ME/CFS and Long Covid research published this week suggests that symptoms of both may be caused by redox imbalance, which is linked to inflammation and reduction of cellular energy production. [Redox imbalance occurs when oxidants and antioxidants in a cell are in a state of disequilibrium, which can lead to cell death and contribute to disease development.]

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Treatment research: The effects of non-invasive vagus nerve stimulation… in patients with CFS, FM, & rheumatoid arthritis

Posted on 08/13/2021 by wames

The effects of non-invasive vagus nerve stimulation on immunological responses and patient reported outcome measures of fatigue in patients with chronic fatigue syndrome, fibromyalgia, and rheumatoid arthritis, by E Traianos, B Dibnah, D Lendrem, Y Clark, V Macrae, V Slater, K Wood, D Storey, B Simon, J Blake, J Tarn, WF Ng in Annals of the Rheumatic Diseases 2021;80:1057-1058

 

Research abstract:

Background:

Fatigue is reported as a common symptom among autoimmune and other chronic diseases such as fibromyalgia (FM), a long-term condition with uncertain pathophysiology. Previous studies from our group suggest that non-invasive vagus nerve stimulation (nVNS) may contribute to the improvement of patient reported outcome measures (PROMs) of fatigue in patients with primary Sjögren’s Syndrome.

Objectives: 

This follow-up study uses the gammaCore device (electroCore) to assess the effect of nVNS on PROMs of fatigue and immune responses in chronic fatigue syndrome (CFS), FM and rheumatoid arthritis (RA).

Methods:

The study included thirteen CFS, fourteen FM and fifteen RA patients who used the gammaCore nVNS device twice daily over a 26-day period.

Pre- and post- nVNS bloods were drawn at baseline and final visits. Whole blood samples were stimulated with 2 ng/mL lipopolysaccharide (LPS) and the IL-6 and TNF-α cytokine concentrations were quantified at 24 hours. In addition, the epidermal growth factor (EGF), IFN-γ, IL-6, IP-10, MIP-1α, and TNF-α levels were measured in ‘pre-nVNS’ serum and flow cytometric profiles of whole blood immune cells were analysed.

The patient reported outcome measures (PROMs) recorded at each visit were the Visual Analogue Scale (VAS) (0-100 cm) of abnormal fatigue, Hospital Anxiety and Depression (HAD) Scale, Orthostatic Grading Scale, Epworth Sleepiness Scale (daytime sleepiness), and Profile of fatigue (PRO-F) for Physical and Mental fatigue. Paired t-tests were performed to assess for changes in PROMs, cytokine levels, and cell subset distribution and associations of cytokine response with PROMs were investigated by correlation analyses.

Results: 

Eleven CFS, twelve FM and fourteen RA patients completed the study. There was a significant reduction in daytime sleepiness in CFS (p =0.0321) and FM (p =0.0294) patients between the final and baseline visits and a significant reduction in HAD depression (p =0.0413) in FM (Fig.1). Improvement in VAS for abnormal fatigue, HAD-Anxiety, HAD-Depression, PRO-F Physical and Mental fatigue was observed in all three groups over the study period with a reduction in VAS fatigue in 64% of CFS, 67% of FM and 62% of RA patients.

There were no significant changes in the immune cell subsets or in cytokine response. Finally, higher baseline pre-nVNS supernatant IL-6 levels were predictive of an improvement in VAS fatigue (p =0.0006), Daytime Sleepiness (p =0.0466) and PRO-F Physical fatigue (p =0.0196) in RA, while higher baseline TNF-α levels were predictive of an improvement in VAS fatigue (p =0.0003), Daytime Sleepiness (p =0.0380), Orthostatic (p =0.0281) and PRO-F Physical fatigue (p =0.0007) in FM.

Conclusion:

Our findings suggest that nVNS may contribute to the improvement of PROMs of fatigue in CFS, FM and RA. NVNS led to significant reductions in daytime sleepiness in CFS and FM, and depression in FM. Further studies and a larger sample size are needed to investigate the potential effects of nVNS on diseases characterised by persistent fatigue.

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New free Pacing app for ME/CFS from Australia

Posted on 08/13/2021 by wames

ME/CFS Pacing App from Emerge Australia

 

Emerge Australia would like to introduce to you the ME/CFS Pacing App created by our generous contributor, Mathew Blake.

The app is designed to help people with mild to moderate ME/CFS better manage their daily energy use and adjust their pacing habits as needed. The app is not designed to manage all symptoms that ME/CFS can cause but to help users to reduce how often they experience post-exertional malaise (PEM).

How does the App work? 

The ME/CFS Pacing App allows you to log your daily activities and use its personalised “energy currency” system to better manage your daily energy.

You decide how much each activity is worth within this currency to you. For example, reading a book takes a different amount of energy for each person and you chose how many points from your “energy currency” to give each activity. This allows the user to see visually where in the day they used too much energy and what days were well balanced.

The ME/CFS Pacing app is available via the Apple App Store and the Google Play Store for free.

Find out more and tell Emerge Australia if you find the app helpful

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Research review: HHV-6 infection & risk of CFS

Posted on 08/12/2021 by wames

Human Herpesvirus 6 infection and risk of Chronic Fatigue Syndrome: a Systematic Review and Meta-Analysis, by Mozhgani S-H, Rajabi F, Qurbani , M, Erfani Y, Yaslianifard S, Moosavi A, Pourrostami K, Baradaran Bagheri A, Soleimani A, Behzadian F, Safavi M, Rezaei F in Intervirology 2021 [doi.org/10.1159/000517930]

 

Review abstract: 

Introduction:

Chronic fatigue syndrome (CFS) is a neurological disease that is accompanied by excessive fatigue or tiredness. There are several reports confirming the association between human herpesvirus 6 (HHV-6) infection and CFS illness. This systematic review and meta-analysis was performed to integrate the information of published studies with regard to this association until May 2021.

Methods:

The literature search was based on keywords including “chronic fatigue syndrome and HHV 6,” “chronic fatigue syndrome and HHV-6,” “chronic fatigue syndrome and HHV6,” “chronic fatigue syndrome and Herpes virus 6,” and “chronic fatigue syndrome and Herpesvirus6” in MEDLINE (PubMed), Web of Science, and EMBASE.

Results:

The literature search identified 17 studies to be included in the systematic review and 11 studies in meta-analysis. The symmetry funnel plot and Egger’s test (p value = 0.2) identified no publication bias among studies. Moreover, the low level of I2 revealed homogeneity across studies.

Discussion:

In conclusion, the association between the HHV-6 infection and CFS incidence was substantiated. However, the results of this study also suggest that further comprehensive studies are needed to solidify the association between HHV-6 and CFS. Future studies should consider additional factors that may have affected the significance of such a correlation.

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Make severe ME visible – Severe ME day, Sun 8 Aug 2021

Posted on 08/08/2021 by wames

Making severe ME visible

 

An estimated 25% of people with ME are so ill they rarely leave their homes or beds.

They feel invisible and ignored.

On Severe ME day each year, 8th August, we make a special effort to recognise the hidden struggles of the 50,000+ in Wales, and the millions worldwide, who are severely affected with Myalgic Encephalomyelitis (ME).

 

~

This year the creative skills of those who are house bound are being showcased in online galleries:

 

Severe ME Art Project–  an online gallery of work from writers, artists, photographers, video makers and other creatives, from #MEAction

Underexposed, ME Photography Exhibition at seeMEexpo

“This exhibit is dedicated to Whitney Dafoe, a young, adventurous, award winning photographer and film maker before developing an extremely severe form of ME/CFS…

While trapped within a tortured body, hidden away in a darkened room, his life was stripped right down to a single purpose. To stay alive.

…Whitney’s purpose was a powerful one. By staying alive, he gave hope to millions of patients worldwide. Since Whitney’s diagnosis, his father, Ronald Davis, a professor of Biochemistry and Genetics and award winning researcher, has devoted his life to finding a cure for ME/CFS in a desperate bid to save his son and millions like him.

By staying alive, Whitney saved lives.”

 

For more information about severe ME and how to care for those living with it see Severe ME care resources on the WAMES website.

See also: WAMES volunteer with ME: Michelle

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Introducing WAMES volunteer with severe ME: Michelle

Posted on 08/08/2021 by wames

Introducing WAMES trustee & social media volunteer: Michelle Penny

 

Hello, my name is Michelle.

My life!

I was diagnosed with ME at the age of 10, although it is thought I may have had the condition for about 2 years before that. I have now had diagnosed ME for approaching 28 years.

I started off mild to moderately affected but after a course of graded exercise my health worsened and I became severely/very severely affected and I have been totally housebound since 1999. I have become worse over the years and have been around 95% confined to my bed for the past 12/14 years.

I started volunteering with WAMES back in 2001.  I have had different roles within WAMES over this time but have always needed considerable help and support to carry out those roles.

I started as the children’s officer even though I couldn’t and still can’t speak to anybody over the telephone. I used to do all my contact via email as it was easy for me do as much or as little as I could cope with.  Sometimes this was only less than 5 minutes at a time. As I said I have always needed considerable support.

The support I need has increased over the years but I still like to do my bit. I have had help from many people over the years, including and especially from Dr Nigel Speight who was my saviour, and it is nice to pay that help back if I can.

Over the past few years my health has deteriorated more and I can do even less than the 5 minutes at a time than I was able to do on occasions.  I have developed an interest in computer aided graphics (totally self taught) so I design and draw with my computer a lot of the WAMES graphics you see now.

I also help my mum (who is also a volunteer with WAMES) with computer problems! She is not very good at all with a computer. As she says herself ‘she is very trying’! She has been my support and my go between with the professionals throughout my illness, no matter how hard that gets at times!

ME is such a misunderstood condition and I look forward to the day when people with ME no longer have to undergo the degrading treatment that they do at present.

Read other volunteers’ stories

Mia

Jan

Sharon

Tony

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Research: CFS: an emerging sequela in COVID-19 survivors? (Italy)

Posted on 08/05/2021 by wames

Chronic fatigue syndrome: An emerging sequela in COVID-19 survivors?, by Elisa Mantovani, Sara Mariotto, Daniele Gabbiani, Gianluigi Dorelli, Silvia Bozzetti, Angela Federico, Serena Zanzoni, Domenico Girelli, Ernesto Crisafulli, Sergio Ferrari, Stefano Tamburin in Journal of NeuroVirology August 2, 2021

 

Research abstract:

SARS-CoV-2 survivors may report persistent symptoms that resemble myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

We explored (a) ME/CFS-like symptom prevalence and (b) whether axonal, inflammatory, and/or lung changes may contribute to ME/CFS-like symptoms in SARS-CoV-2 survivors through clinical, neuropsychiatric, neuropsychological, lung function assessment, and serum neurofilament light chain, an axonal damage biomarker.

ME/CFS-like features were found in 27% of our sample.

ME/CFS-like group showed worse sleep quality, fatigue, pain, depressive symptoms, subjective cognitive complaints, Borg baseline dyspnea of the 6-min walking test vs. those without ME/CFS-like symptoms. These preliminary findings raise concern on a possible future ME/CFS-like pandemic in SARS-CoV-2 survivors.

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Viewpoint: Weir & Speight – ME/CFS: Past, present & future

Posted on 08/04/2021 by wames

ME/CFS: Past, present and future, by William Weir and Nigel Speight in  Healthcare 2021, 9(8), 984 [doi.org/10.3390/healthcare9080984]

 

Article abstract:

Dr Nigel Speight, WAMES medical adviser

This review raises a number of compelling issues related to the condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some historical perspective is necessary in order to highlight the nature of the controversy concerning its causation.

Throughout history, a pattern tends to repeat itself when natural phenomena require explanation. Dogma usually arrives first, then it is eventually replaced by scientific understanding.

The same pattern is unfolding in relation to ME/CFS, but supporters of the psychological dogma surrounding its causation remain stubbornly resistant, even in the face of compelling scientific evidence to the contrary. Acceptance of the latter is not just an academic issue; the route to proper understanding and treatment of ME/CFS is through further scientific research rather than psychological theorisation. Only then will a long-suffering patient group benefit.

Extract:

Dr William Weir

In conclusion, proper scientific research into the physical cause(s) of ME/CFS will eventually replace the damaging influence of pseudoscientific, psychological dogma. A reliable biomarker currently in development [25] is a big step in this direction.

Also, the current Covid19 pandemic may be a cloud with a silver lining. “LongCovid”, a devastating aftermath of Covid19 infection, is currently attracting research funding. The clinical presentations of “LongCovid” are strikingly similar to those of ME/CFS, and the underlying pathology may well be the same [26]. Hopefully, the funds referred to will be used for properly directed scientific searches for the precise cause of this pathology, rather than for a PACE mark 2.

To paraphrase Albert Einstein:

“the definition of insanity is to do the same thing again, expecting a different result”.

If sanity prevails, properly focussed scientific research will eventually bring much needed relief to a population of patients who have hitherto been very poorly served by the medical profession.

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Hypothesis: A paradigm for CFS… cranial venous outflow obstruction

Posted on 08/03/2021 by wames

A paradigm for chronic fatigue syndrome: caught between idiopathic intracranial hypertension and spontaneous intracranial hypotension; caused by cranial venous outflow obstruction, by J Nicholas P Higgins, John D Pickard in Fatigue: Biomedicine, Health & Behavior, 26 Jul 2021 [doi.org/10.1080/21641846.2021.1956223]

 

Article abstract:

Background

Clinical similarities between chronic fatigue syndrome and idiopathic intracranial hypertension, supported by measurements of intracranial pressure, invite suggestions that they may be connected, the first representing a mild version of the second. Yet, if this is to be the basis for a structural explanation for chronic fatigue syndrome, it already seems incomplete, failing to explain cases where disability seems disproportionate. Is there some other confounding variable?

Purpose

To refine, in this theoretical paper, an earlier model connecting chronic fatigue syndrome with idiopathic intracranial hypertension to allow for a cerebrospinal fluid (CSF) leak.

Cerebrospinal fluid (CSF) is a clear, colorless body fluid found within the tissue that surrounds the brain and spinal cord of all vertebrates [animals with backbones].          From: Wikipedia

Model

In this model, the primary structural problem is acquired obstruction to cranial venous outflow. This obstruction can take different forms, may be intermittent and subtle, and even be mistaken for normal venous anatomy, yet would be the driving force behind a tendency towards increased intracranial pressure. This chronic elevation of intracranial pressure stresses the dural membrane maintaining the integrity of the subarachnoid space, which can rupture at a weak point, allowing CSF to leak away and intracranial pressure to fall. The clinical manifestation of this disorder is the product of the severity of cranial venous outflow compromise and of the competing forces on intracranial pressure.

Figure 1. Obstruction to cranial venous outflow causes a rise in intracranial venous pressures leading to a rise in intracranial pressure and the syndrome of IIH. If a CSF leak develops before IIH becomes evident then the physiological disturbance manifests as spontaneous intracranial hypotension (SIH). IIH and SIH have multiple overlapping symptoms and patients may reach an equilibrium position between them, or may cycle between one and the other, reflecting opposing forces on intracranial pressure.

In some instances, a CSF leak will mitigate the effects of venous compromise, in others it will compound it, producing a disease spectrum ranging through idiopathic intracranial hypertension, chronic fatigue syndrome, fibromyalgia, and spontaneous intracranial hypotension.

Conclusion

In chronic fatigue syndrome a normal intracranial pressure does not exclude significant physiological disturbance.

Extract from full article:

We suggest, therefore, that cranial venous outflow obstruction can take different forms, may be intermittent and subtle, and even mistaken as part of normal variant anatomy, yet be the driving force behind a disorder of intracranial pressure in which pressure may be high, normal or low, depending on the nature and severity of venous compromise and whether or not it is complicated by a CSF leak.

We suggest that the clinical manifestation of this disorder will reflect, not just intracranial pressure, but also the underlying venous obstruction, and is represented by a spectrum which includes chronic fatigue syndrome, fibromyalgia, spontaneous intracranial hypotension and IIH. We suspect that a similar mechanism may be operative in other medically unexplained syndromes.

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