#TimeForUnrestWales – the struggle to get an accurate diagnosis

#TimeForUnrestWales

 a campaign for recognition of ME and health equality

There is a Health and Social Care crisis for people with ME in Wales, starting with the struggle patients have to find an accurate diagnosis from doctors who understand ME.

The Welsh Government has had a plan to change that since 2014 – the Task & Finish Group Report and Recommendations – but NHS Wales has failed to take them seriously and  little has changed.

WAMES is therefore asking the Cabinet Secretary for Health:

to provide, as a matter of urgency, support and finance for a national training and awareness programme.

The Task & Finish Group Report describes the challenges:

For patients: achieving timely diagnosis for ME/CFS remains a significant challenge (5.1)

“Many patients still do not feel that GPs take them seriously and some continue to report experiencing hostility. Patients express concerns that GPs seem to have limited knowledge of their condition… 

Delayed and/or multiple referrals are common due to difficulty in identifying the condition and/or the most appropriate specialist, and diagnosis can sometimes take several years. Such significant delays in providing effective self-management support may result in considerably greater long term support needs.

Patient groups report that some GPs have a low understanding of the post-exertional nature of the condition, the sheer degree of physical debilitation which it can cause, sub-groups of patients and the range of severity that is seen. There are also difficulties with obtaining home visits where needed and with GPs understanding that, due to cognitive difficulties, patients may need a written summary of discussions.”

For GPs (5:1):

“GPs meanwhile face significant challenges in diagnosis and management because of multiple and complex symptoms and a historic lack of consensus on diagnosis and treatment. This is compounded by the lack of a clear referral pathway and the limited specialist interest in diagnosis or providing treatment once a diagnosis is reached…when they [Health Boards] provide training for GPs, sessions tend to be attended by those who already have an interest, without the knowledge spreading further.”

For Health Boards (5):

  • “limitations to the evidence base for appropriate interventions;
  • a shortage of professionals with specialist knowledge, interest or the confidence to diagnose 
  • few clinical champions within NHS Wales 
  • resource and financial constraints “

The Report recommends:

Recommendation 5: “Each Health Board should undertake work to raise awareness of ME/CFS and Fibromyalgia in primary care, to support timely diagnosis and effective management of both children and adults 

Health Boards should provide support to GPs to support people living with ME/CFS and Fibromyalgia to become experts in their own care and self-management, as well as providing clear pathways for referral for specialist support as appropriate. 

Recommendation 8: The All Wales Implementation Group to “provide advice on an All-Wales approach to the provision of training and support for GPs

WAMES has asked the Cabinet Secretary for Health & Social Services, Vaughan Gething, to #HelpNHSbeMEaware and:

to provide, as a matter of urgency, support and finance for a national training and awareness programme which takes into account:

  • The need to invite expert clinicians from outside Wales to take part – There are no medical experts in Wales available to share their knowledge, and if we wait for them to ‘miraculously appear’ there will be no training and awareness undertaken.
  • The controversy over aetiology, diagnostic criteria and management advice – It would be important to develop a strategy that accepts this current tension and informs staff about it.

Many NHS staff are happy to accept the current NICE guidelines (now being revised) whose treatment recommendations are based on a psycho-social understanding of CFS and partially based on research results that have been found to have been inaccurate).

On the other hand patients and some NHS staff know about the biomedical research revelations and understand ME to be a condition classified as neurological with neuro-immune-endocrine involvement.

Neither belief should be allowed to be a barrier to patients getting a diagnosis and accessing medical care and other support. e.g. A medical diagnosis is necessary to access social care, transport, educational adjustments, benefits etc.  Without social care severely affected patients can live in squalor and extreme distress.

Carers are collapsing under the strain of caring for their loved ones alone.  The right of patients, including children,  to choose the care they wish should be included as a theme running through the programme.

  • The need for a standard training / awareness programme for use across Wales – Experienced trainers need to develop a programme so that an even standard is achieved, in spite of the lack of local knowledge, the controversies surrounding the illness, and the limitations of outside experts with no knowledge of the NHS in Wales. This programme should also give staff the opportunity to hear the experiences of people with ME and CFS.
  • Funding for travel – The initiative could also fund clinicians to attend major conferences and workshops in England, where they can learn from international researchers and experienced clinicians.
  • Ongoing programme – There is a need for Health Boards to hold ongoing awareness sessions to ensure a wide range of staff are reached over a period of time.

Much work is needed to put ME & CFS on an equal basis with other neurological conditions!

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Hywel Dda ‘Our big NHS change’ Facebook virtual consultation event, 23 May 2018

Hywel Dda University Health Board blog post: Hywel Dda – Our Big NHS Change

Our doctors, nurses and therapists want to talk to you about “Our big NHS Change” proposals for Carmarthenshire, Ceredigion and Pembrokeshire and listen to your views.

These are informal Drop In Events. Please come along at any time between 2pm and 7pm to find out more.

This is your opportunity to tell us what you think or give us new ideas.

Wednesday 23rd May 6pm-8pm – Facebook Virtual Event – Online question and answer session with a panel of clinicians, follow us on Facebook here for more details:  https://www.facebook.com/TrawsnewidHywelDdaChange

For more information go to website   or call 01554 899 056

Future consultation events include:

  • Thursday 24th May 2018 – Llandybie Memorial Hall, Llandybie SA18 3UR
  • Monday 4th June 2018 – Rhys Pritchard Memorial Hall, Llandovery SA20 0DS
  • Monday 11th June 2018 – Penybanc Welfare Hall, Ammanford SA18 3QS
  • Thursday 14th June 2018 – City Hall, St Davids SA62 6SD
  • Monday 18th June 2018 – Tysul Hall, Llandysul SA44 4HS
  • Monday 18th June 2018 – Yplas, Aberystwyth Road, Machynlleth, SY20 8ER
  • Tuesday 26th June 2018 – Pembrokeshire Archives Building, Haverfordwest SA61 2PE
  • Monday 2nd July 2018 – Victoria Hall, Lampeter SA48 7EE
  • Thursday 5th July 2018 – Pill Social Centre, Milford Haven SA73 2QT

We have a once-in-a-lifetime chance to fundamentally change the way that we provide local healthcare services for the better – and we want to hear what you have to say about it.

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Inquest Ruling: Young drama student Merryn Crofts killed by ME

ME Association blog post by John Siddle, 18 May 2018: Inquest Ruling: Young drama student Merryn Crofts killed by M.E. 

A devastating disease that some experts insist is all in the mind led to the death of a young drama student, a landmark inquest today ruled.

Merryn Crofts, 21, weighed less than six stone and had spent the last three years of her life totally bed-bound with severe ME – an incurable condition that affects 250,000 people in the UK.

The youngster was unable to take more than two teaspoons of food before suffering immense gut pain and vomiting, a coroner was told.

Merryn, from Rochdale, today became only the second person in the UK to have M.E. – myalgic encephalomyelitis – listed on a death certificate.

Despite being classed as a real neurological disease, many think the condition is not real – even within the medical profession.

Merryn’s mum, Clare Norton, sobbed as she told Rochdale Coroner’s Court how her “beautiful” and “energetic” daughter was left wheelchair-bound and reliant on tube feeding.

She said:  “As a child, she was a bundle of energy. She didn’t walk anywhere – she would hop, skip and jump.

“She was the kind of person that people gravitated towards. They wanted to be her friend.

“She was very social and loved drama. She was a total fashionista, a typical teenager. Her bedroom was a mess of clothes, hairspray and tan.

“But she was also stubborn, and I think that helped her cope with her illness in a lot of ways. She never gave up.”

In August 2011, Merryn, then 15, was diagnosed with hives and swelling shortly after coming back from a family holiday in Mallorca.

Tests in early 2012 revealed that at some point she had contracted glandular fever – a virus which can trigger M.E.

Despite dozens of medical appointments – including mental health checks for panic attacks – Merryn’s condition deteriorated as she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound.

She was eventually diagnosed with M.E. in the summer of 2012.

The would-be theatre star, who was forced to wear an eye mask, also suffered from severe migraines, brain fog, slurred speech and persistent infections.

Stomach problems, and problems swallowing, meant that her weight plummeted to just five-and-a-half stone.Coroner Katherine McKenna was told that Merryn could take on just 100 calories a day because her gut was in so much pain, and that, by 2015, even two teaspoons of nutrients were intolerable.

Merryn was eventually fitted with an intravenous nutrition line but suffered intestinal failure and was given a terminal diagnosis in 2016.

She died on May 23, 2017, just days after her 21st birthday.

Mrs McKenna today concluded her cause of death as starvation caused by a withdrawal of supportive nutrition, caused by M.E. She described Merryn as someone who “bore her suffering with dignity and good grace”.

She said: “Merryn had suffered with M.E. since 2012 which caused severe fatigue, gastrointestinal failure, chronic pain, global hypersensitivity, loss of mobility and function.

“Despite extensive investigations no reason for her gastrointestinal failure which led to her reliance on supportive nutrition was found and it most likely it was caused by her M.E.”

Mum Clare, who attended the inquest with daughter Amy Williams and Merryn’s stepdad Dave Norton, told of her long-standing belief that M.E. contributed to her death.

She said: “With M.E. the key symptom is post-exertional malaise. That means if someone’s energy is pushed beyond what they can tolerate, it will trigger all their symptoms.

“The best advice we were given was for Merryn to do just 50% of what she felt capable of.

“But Merryn didn’t even have 50% to give. She was always crashing, so everything that happened to her kept pushing her further behind.”

Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.

Dr DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.

M.E. expert at Salford Royal hospital, Dr Annice Mukherjee, said she was convinced that the illness was responsible for triggering Merryn’s intestinal failure.

Read more

NB  While it is possible that only 2 people have been recorded as dying of ME. Other people in the UK have had CFS listed as a cause of death on their death certificates, 1 known in Wales.

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NICE Guideline ME/CFS Scoping Workshop, 25 May 2018

NICE Guideline ME/CFS Scoping Workshop

On Friday 25 May WAMES will be representing people with ME and their families and carers at the NICE guideline scoping workshop in London.

The meeting will last 2 ½ hours and we will be discussing the guideline scope.

Guideline scope

1. Why the guideline is needed

2. Who the guideline is for

3 What the guideline will cover

3.1 Who is the focus?
3.2 Settings i.e. NHS or social care
3.3 Activities, services or aspects of care

Key areas that will be covered:

1 Identification and assessment before diagnosis
2 Diagnosis of ME/CFS
3 Management of ME/CFS
4 Monitoring and review
5 Information, education and support for people with suspected and  diagnosed      ME/CFS, their families and carers

Areas that will not be covered:

1 The management of comorbid conditions
2 The specific management of symptoms where NICE guidance already exists (see below related NICE guidelines)

3.4 Economic aspects
We will take economic aspects into account when making recommendations. We will develop an economic plan that states for each review question (or key area in the scope) whether economic considerations are relevant, and if so whether this is an area that should be prioritised for economic modelling and analysis. We will review the economic evidence and carry out economic analyses, using an NHS and Personal Social Services perspective.

3.5 Key issues and draft questions
While writing this scope, we have identified the following key issues and draft question related to them:

1 Identification and assessment before diagnosis

1.1 In whom should ME/CFS be suspected?
1.2 What is the most clinically and cost effective method of assessing people with suspected ME/CFS?
1.3 Can disability or assessment scales aid the identification of people with ME/CFS?
1.4 What are the barriers and facilitators to the identification of ME/CFS?

2 Diagnosis of ME/CFS

2.1 What tests are clinically and cost effective in supporting or excluding a diagnosis of ME/CFS?
2.2 In people with suspected ME/CFS how accurate are the criteria used to establish the diagnosis?

3 Management of ME/CFS

3.1 What is the clinical and cost effectiveness of pharmacological interventions for people with ME/CFS?
3.2 What is the clinical and cost effectiveness of non-pharmacological interventions for people with ME/CFS (including dietary supplementation, graded exercise therapy, pacing, the Lightning Process and 20 psychological interventions such as CBT)?
3.3 What is the clinical and cost effectiveness of self-management strategies such as heart rate monitors for people with ME/CFS?

4 Monitoring and review

4.1 What is the most clinically and cost effective method of monitoring people with ME/CFS?
4.2 What is the most clinically and cost effective method of reviewing people with ME/CFS?

5 Information and support for people with suspected and diagnosed ME/CFS?

5.1 What information and support do people with ME/CFS and their families / carers require?

6 Main outcomes
The main outcomes that may be considered when searching for and assessing the evidence are:

1 Quality of life (for example EQ-5D, SF-36)
2 Pain
3 Fatigue
4 Physical functioning (a person’s ability to do everyday tasks and activities)
5 Psychological well-being
6 Care needs

Download the full scoping document

Contact Jan if you have any comments jan@wames.org.uk

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Hywel Dda ‘Our big NHS change’ consultation event, Llanelli 22 May 2018

Hywel Dda University Health Board blog post: Hywel Dda – Our Big NHS Change

Our doctors, nurses and therapists want to talk to you about “Our big NHS Change” proposals for Carmarthenshire, Ceredigion and Pembrokeshire and listen to your views.

These are informal Drop In Events. Please come along at any time between 2pm and 7pm to find out more.

This is your opportunity to tell us what you think or give us new ideas.

Tuesday 22nd May 2018 – Selwyn Samuel Centre, Llanelli SA15 3AE

For more information go to website   or call 01554 899 056

Future consultation events include:

  • Wednesday 23rd May 6pm-8pm – Facebook Virtual Event – Online question and answer session with a panel of clinicians, follow us on Facebook here for more details:  https://www.facebook.com/TrawsnewidHywelDdaChange
  • Thursday 24th May 2018 – Llandybie Memorial Hall, Llandybie SA18 3UR
  • Monday 4th June 2018 – Rhys Pritchard Memorial Hall, Llandovery SA20 0DS
  • Monday 11th June 2018 – Penybanc Welfare Hall, Ammanford SA18 3QS
  • Thursday 14th June 2018 – City Hall, St Davids SA62 6SD
  • Monday 18th June 2018 – Tysul Hall, Llandysul SA44 4HS
  • Monday 18th June 2018 – Yplas, Aberystwyth Road, Machynlleth, SY20 8ER
  • Tuesday 26th June 2018 – Pembrokeshire Archives Building, Haverfordwest SA61 2PE
  • Monday 2nd July 2018 – Victoria Hall, Lampeter SA48 7EE
  • Thursday 5th July 2018 – Pill Social Centre, Milford Haven SA73 2QT

We have a once-in-a-lifetime chance to fundamentally change the way that we provide local healthcare services for the better – and we want to hear what you have to say about it.

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Ystradgynlais neuro café has moved venue

Ystradgynlais neuro café has moved

The Headway South Powys Neuro Café now meets at MIND, 66 Penybryn, Penrhos, Ystradgynlais, SA9 1JB

Meetings take place 1st and 3rd Wednesday of every month between 2pm—4pm at Mind, 66 Penybryn, Penrhos, Ystradgynlais, SA91JB:

  • 1st Wednesday will be games, informal social time and a cuppa.
  • 3rd Wednesday will be education/information sessions focusing on specific conditions & needs with advice and tips.
  • We may go for social outings or activity as and when agreed and organised.

Everyone with experience of, or an interest in, the effects of a neurological condition is welcome. It is for survivors, carers and their families.

For more information please ring: Caroline on 01639 830163 or 07503 163 766 (mobile)

Email: headwaysouthpowys@hotmail.com

Download Neuro café leaflet

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The high costs of low-grade inflammation

Review abstract:

The High Costs of Low-Grade Inflammation: Persistent Fatigue as a Consequence of Reduced Cellular-Energy Availability and Non-adaptive Energy Expenditure. by Tamara E. Lacourt, Elisabeth G. Vichaya, Gabriel S. Chiu, Robert Dantzer and Cobi J. Heijnen in Front Behav Neurosci. 2018 Apr 26;12:78.

Chronic or persistent fatigue is a common, debilitating symptom of several diseases. Persistent fatigue has been associated with low-grade inflammation in several models of fatigue, including cancer-related fatigue and chronic fatigue syndrome. However, it is unclear how low-grade inflammation leads to the experience of fatigue. We here propose a model of an imbalance in energy availability and energy expenditure as a consequence of low-grade inflammation.

In this narrative review, we discuss how chronic low-grade inflammation can lead to reduced cellular-energy availability. Low-grade inflammation induces a metabolic switch from energy-efficient oxidative phosphorylation to fast-acting, but less efficient, aerobic glycolytic energy production; increases reactive oxygen species; and reduces insulin sensitivity.  These effects result in reduced glucose availability and, thereby, reduced cellular energy. In addition, emerging evidence suggests that chronic low-grade inflammation is associated with increased willingness to exert effort under specific circumstances.

Circadian-rhythm changes and sleep disturbances might mediate the effects of inflammation on cellular-energy availability and non-adaptive energy expenditure.

In the second part of the review, we present evidence for these metabolic pathways in models of persistent fatigue, focusing on chronic fatigue syndrome and cancer-related fatigue. Most evidence for reduced cellular-energy availability in relation to fatigue comes from studies on chronic fatigue syndrome. While the mechanistic evidence from the cancer-related fatigue literature is still limited, the sparse results point to reduced cellular-energy availability as well.

There is also mounting evidence that behavioral-energy expenditure exceeds the reduced cellular-energy availability in patients with persistent fatigue. This suggests that an inability to adjust energy expenditure to available resources might be one mechanism underlying persistent fatigue.

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Kidz to adultz Wales & West disability exhibition, Bristol 5 July 2018

Kidz to Adultz Exhibition Bristol

The ‘Kidz to Adultz’ free exhibition is aimed at children and young adults up to 25 years with disabilities and additional needs, their parents, carers and all the professionals who support and work with them.

100+Exhibitors at the event!
These exhibitions are a one stop shop for the most up to date advice and information on mobility, funding, seating, beds, communication, sensory, transition, education, housing, employment, accessible vehicles, transport, style, sports, leisure and much, much more.

Seminars
Boost your CPD portfolio and gain credits by attending one or more of the FREE accredited seminars taking place alongside the exhibition. Seminars are presentations covering a wide range of issues and interests to families and carers of children with disabilities and special needs, and the professionals who work with them. For professionals, CPD certificates of attendance will be available to collect on the day. The speakers will also be on hand throughout the day to answer any questions you may have.

When & where
Thursday 5th July 2018, 9.00am – 4.30pm
Thornbury Leisure Centre, Bristol  BS35 3JB

Entry is FREE on a first come, first served basis.
Get your ticket here, though tickets are not compulsory. You can register on arrival at the event.

More information

View the 2017 Kidz to adultz Wales newsletter

 

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Brain function characteristics of CFS

Research abstract:

Brain function characteristics of chronic fatigue syndrome: A task fMRI study, by
Zack Y Shan, Kevin Finegan, Sandeep Bhutab, Timothy Ireland, Donald R Staines, Sonya M.Marshall-Gradisnik, Leighton R.Barnden in NeuroImage: Clinical
Vol 19, 2018, Pages 279-286

Highlights

  • CFS patients recruit larger BOLD activation areas for the Stroop task.
  • BOLD signal complexities in CFS are lower in ten activated regions.
  • The BOLD signal complexity is correlated with the SF-36 health score across all subjects.
  • The BOLD signal complexity explains more than 40% of variance in the health score across all subjects.

Abstract

The mechanism underlying neurological dysfunction in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is yet to be established. This study investigated the temporal complexity of blood oxygenation level dependent (BOLD) changes in response to the Stroop task in CFS patients.

43 CFS patients (47.4 ± 11.8 yrs) and 26 normal controls (NCs, 43.4 ± 13.9 yrs) were included in this study. Their mental component summary (MCS) and physical component summary (PCS) from the 36-item Short Form Health Survey (SF-36) questionnaire were recorded. Their Stroop colour-word task performance was measured by accuracy and response time (RT). The BOLD changes associated with the Stroop task were evaluated using a 2-level general linear model approach. The temporal complexity of the BOLD responses, a measure of information capacity and thus adaptability to a challenging environment, in each activated region was measured by sample entropy (SampEn).

The CFS patients showed significantly longer RTs than the NCs (P < 0.05) but no significant difference in accuracy. One sample t-tests for the two groups (Family wise error adjusted PFWE < 0.05) showed more BOLD activation regions in the CFS, although a two sample group comparison did not show significant difference. BOLD SampEns in ten regions were significantly lower (FDR-q < 0.05) in CFS patients. BOLD SampEns in 15 regions were significantly associated with PCS (FDR-q < 0.05) and in 9 regions were associated with MCS (FDR-q < 0.05) across all subjects. SampEn of the BOLD signal in the medioventral occipital cortex could explain 40% and 31% of the variance in the SF-36 PCS and MCS scores, and those in the precentral gyrus could explain an additional 16% and 7% across all subjects.

This is the first study to investigate BOLD signal SampEn in response to tasks in CFS. The results suggest the brain responds differently to a cognitive challenge in patients with CFS, with recruitment of wider regions to compensate for lower information capacity.

Graphical abstract

The sample entropy (a measure of amount of information encoded in a temporal signal) of BOLD response to Stroop tasks in seven areas are significantly lower in patients with chronic fatigue syndrome (CFS) and significantly correlated health scores across all subjects, suggesting that the brain operates differently in CFS patients.

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Cwtch support group meets Haverfordwest 18 May 2018

Evening Meeting of Cwtch:

Friday 18 May 2018, 6-8 pm at Cashfield Community Centre, Haverfordwest, SA61 2GA

Topic: Talk on managing symptoms & CBT by Lindsay Ford, Occupational Therapist (OT)

Cwtch is a support group for adults aged 18-45 years old who have long term or chronic physical health conditions. (One of the organisers has ME).

More info: 07530 870024   cwtch@live.co.uk

CWTCH (Pembrokeshire) website: http://cwtch-pembrokeshire.wales/

Facebook: https://www.facebook.com/CWTCHpembs/

Next meeting: Thurs 14 & 21 June Spa days – book by May 16th at the latest

 

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Association of T & NK cell phenotype with the diagnosis of ME/CFS

Research abstract:

Association of T and NK cell phenotype with the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), by Jose Luis Rivas, Teresa Palencia, Guerau Fernández, Milagros Garcia in Front. Immunol., 09 May 2018

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a pathological condition characterized by incapacitating fatigue and a combination of neurologic, immunologic, and endocrine symptoms.  At present its diagnosis is based exclusively on clinical criteria.

Several studies have described altered immunologic profiles; therefore, we proposed to further examine the more significant differences, particularly T and NK cell subpopulations that could be conditioned by viral infections, to discern their utility in improving the diagnosis and characterization of the patients.

The study included 76 patients that fulfilled the revised Canadian Consensus Criteria (CCC 2010) for ME/CFS and 73 healthy controls, matched for age and gender.

Immunophenotyping of different T cell and natural killer cell subpopulations in peripheral blood was determined by flow cytometry.

ME/CFS patients showed significantly lower values of T regulatory cells (CD4+CD25++(high)FOXP3+) and higher NKT-like cells (CD3+CD16+/−CD56+) than the healthy individuals. Regarding NK phenotypes, NKG2C was significantly lower and NKCD69 and NKCD56 bright were significantly higher in the patients group. A classification model was generated using the more relevant cell phenotype differences (NKG2C and T regulatory cells) that was able to classify the individuals as ME/CFS patients or healthy in a 70% of cases.

The observed differences in some of the subpopulations of T and NK cells between patients and healthy controls could define a distinct immunological profile that can help in the diagnostic process of ME/CFS patients, contribute to the recognition of the disease and to the search of more specific treatments. However, more studies are needed to corroborate these findings and to contribute to establish a consensus in diagnosis.

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