500 miles for ME – Rob raises £1,00 for WAMES

Rob began his challenge in June –  to walk 500 miles for ME over the course of 100 days, to greet the sunrise at Paxton’s Tower, near Carmarthen.

He is now three quarters of the way along. He has faced a wide range of weather, and a knee injury, and been joined by friends and family.

He “feels lucky to be doing something people with ME can’t” as so many are in the “slow lane”, [though Ffion in her poem reminds us that some of us are not even in the slow lane but “on the hard shoulder!”]

We are grateful to people who have supported Rob and donated:

WAMES  £1,000

ME Research UK  £1,343

Invest in ME Research £1,230

And Rob’s fundraising challenge is not over yet! Donate here

He is also taking time to record interviews, “raising awareness and educating about this debilitating disease that has for too long been neglected, resulting in #millionsmissing from their own lives.” Herre is a clip from his interview with Jan Russell about the work of WAMES in Wales.

So far there have been 3 Discussions at Dawn with

• Jan Russell, chair of WAMES
• Dr Nina Muirhead    Doctors with ME
• Karen Leslie, from Physios for ME

Rob has taken on this challenge on top of caring for his youngest son, who is currently bedbound. Fortunately he has the support and technical expertise from other family members, to whom we can thank for his online presence:

500 miles for ME web page      Discussions at dawn

Facebook: 500miles4ME      Twitter/X: @500miles4ME 

MEA Count ME In survey of  health and social care for ME/CFS and Long COVID 

7,303 people in the UK completed the ME Association’s survey:

• 85% (6,208 people) had a diagnosis of ME/CFS
• 10% (730) had a diagnosis of Long Covid
• 5% (365 people) were undiagnosed but experienced the 4 core symptoms of ME/CFS

In general, experiences with the NHS were more likely to be rated poor than good and were worse for ME/CFS than Long Covid:

• Only 8% of those with ME/CFS rated the NHS as good or excellent, and with Long Covid it was 15%.
• Top barriers to good care were long waiting times, not being listened to or believed, and ineffective treatments.
• Every region in the UK scored badly. More than 50% of regions received a very poor or poor opinion. Wales, Northern Ireland, West Midlands, Southeast England, and Scotland received over 65%.
• There are many barriers to receiving a timely diagnosis – the main ones being that people were diagnosed with a different condition, not being referred to specialists by GPs, long waits for tests or referrals, and not being taken
  seriously.

In Wales

69% of survey participants said that the support they had received from the NHS for ME/CFS was poor or very poor.

Only 35% of Welsh participants found the specialist services for ME/CFS to be good or excellent [We don’t know what these ‘specialist services’ in Wales were!]

WAMES will be bringing these results to the attention of the Health Boards in Wales as they work to develop services for people with ME/CFS. Please let us know if you see any improvement in the service you get from GPs or other health and social care professionals. Contact jan@wames.org.uk or any member of the team.

#ImplementNICE mecfs

Read the full MEA survey results

Disbelief and Disregard in health and social care for people with Energy Limiting Conditions (ELC) Part 2

A research project into Energy Limiting Conditions (ELC) wanted to understand the problems people experience getting the support they need from health and social care services.

Part 2 of the research highlights the psychological harms experienced by the participants due to discrimination.

“disbelief made me feel worthless”: the impact of poor healthcare on mental health and wellbeing

Disbelief and Disregard Damages People’s Mental Health

Experiences of “medical gaslighting” left participants feeling traumatised, distressed, and depressed. Participants explained how being disbelieved when they sought medical help made them
question their “value”, core beliefs and self-knowledge.

Disbelief and Avoidance of Medical Care

Being disbelieved erodes the trust that patients have in healthcare professionals. Routine disbelief and disregard become routine experiences, they become reluctant to seek help and they begin to avoid medical encounters as much as possible, leading to worsening health.

Impact of Disbelief on Relationships with Friends and Family

In addition to the breakdown in relationships with healthcare professionals, participants also explained how the disbelief of healthcare professionals, amplified through the media, has a negative impact on relationships with friends and family.

Recommendations – A pathway to Equality:

• The medical profession must listen and believe
• Better patient pathways and quality of care are needed for people with ELC.
• Training of all health, social care, and welfare professionals must include information about energy limiting conditions.
• Institutional sexism in health, social care and welfare systems must be tackled along with racism, ageism, homophobia, ableism, transphobia, fatphobia etc.
• Simpler ways for people with ELC to access support in welfare, social care, employment and education are needed.
• People with ELC must be part of conversations about policy and practice that affects them, and equal partners in research on ELC.

Read more about the psychological harms

An introduction to ELCs & the Disbelief and Disregard project

Disbelief and disregard project website

Disbelief and Disregard in health and social care for people with Energy Limiting Conditions (ELC) Part 1

A research project into Energy Limiting Conditions (ELC) wanted to understand the problems people experience getting the support they need from health and social care services.

Project 1: Disbelief and Disregard: The Gendered Experiences of Energy Limiting Chronic Illnesses

This project looked at the experiences of health and social care for people who identify as women, trans men and non-binary people with ELCs.

According to estimates by the Department for Work and Pensions (DWP), 1 in 3 disabled people in the UK experienced impairments in stamina/breathing/fatigue.

These experiences are shared by people living with a range of conditions, including neurological, musculoskeletal, and auto-immune diseases, ME/CFS and fibromyalgia. The COVID-19 pandemic has significantly increased this population.

Watch this summary of experiences

They found that many face discrimination, often in the form of not being listened to or believed.

This is compounded by other forms of discrimination such as sexism, racism, transphobia, homophobia and fatphobia.

Disbelief and disregard in interactions with healthcare professionals has significant negative impact on all areas of people’s lives.

Disbelief and disregard: psychological harms

Disbelief and disregard project website

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

This petition has been posted on behalf of the committee of the international Science for ME forum:

People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane Review.

Cochrane is an international organisation that publishes reviews of research evidence for treatments of diseases; it has a lot of influence over clinical guidelines used around the world. Four years ago, in October 2019, Cochrane published ‘Exercise therapy for CFS‘, supporting the use of exercise therapy for chronic fatigue syndrome (more correctly known as ME/CFS).

Cochrane’s editor-in-chief admitted the review was not fit for purpose on publication, but it continues to be hosted in the Cochrane Library and cited in scientific journals and clinical guidelines. This is despite government organisations such as the UK’s NICE (NG206: 1.11.14) and the USA’s CDC having found, following unbiased evaluations, that there is no evidence that exercise therapy is effective for ME/CFS. This is also despite virtually all ME/CFS patient organisations rejecting exercise therapy as a valid treatment of the disease and many people with ME/CFS reporting becoming much sicker after graded exercise therapy.

Also in October 2019, the Cochrane editor-in-chief promised to commission a new review with the process to be a pilot of a new approach, involving an independent advisory group and public consultation. The aim was to complete it in two years. In 2023, not even the first step, a review protocol, has been agreed.  There has been no public consultation and none of the promised monthly updates since August 2021.

The Covid-19 pandemic has created even more need for evidence-based assessments of proposed therapies for ME/CFS. Many of the millions of people who are developing Long Covid meet ME/CFS criteria and have the symptom of post-exertional malaise, contraindicating Graded Exercise Therapy.

The committee and members of the international Science for ME forum have written to Cochrane requesting:

1. The immediate withdrawal or retraction of the 2019 Cochrane review ‘Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions.

AND

2. An immediate restart of regular monthly updates on the new review process, with clearly stated timelines for completion of the review to publication within one year from now.
OR
Abandonment of the new review process.

The letter has been posted here:
S4ME: 2023 Open Letter to Cochrane – request for action on the ME/CFS Exercise Therapy Review

WAMES and the World ME Alliance have co-signed the letter.

Please sign this petition to call on Cochrane for action.

A letter to the world

This is a piece of prose I wrote in the early years of living with ME. I remember feeling immensely frustrated when people in my life told me I looked well and was really lucky to have fully recovered from ME!

The fluctuating and invisible nature of the illness just passed everyone by, leaving me feeling completely lost, alone and unseen…

Letter to those in a world untouched by ME

By Rachel Hazlewood

Your sleepless night; your tiredness; your headache or foggy brain.

All of your bodily aches and pains I understand. I am compassionate. You have my concern and support for all of these and so much more.

But more than this, you have my understanding – my empathy. For I know what these feel like. In your moment of ill health you are not suffering alone – for I am right there with you, walking by your side, feeling every step with you.

I do not have a monopoly on pain, on fatigue, on feeling ill from head to toe, or that inevitable accompanying feeling of frustration and incompetence. Yes, you are entitled to this and you will have my love and support and concern – without hesitation or question.

But know this: take that feeling and know that it will pass. It may take only minutes, it may take hours or even days. If you’re really unlucky you will feel ill for a few weeks, or even months. But it will pass. And when it does you will forget – oh how quickly you will forget what torment you lived through.

But know this… it will pass… how quickly you will forget

So, when you are at your lowest ebb; when you are in the deepest depths of your suffering, please find a small chink of humanity and compassion to capture that feeling and to hold onto it.

Think. Even just for the most fleeting of instants, what life is like for those of us patiently waiting – waiting for minutes, hours, days, weeks, months and years. So many minutes, so many days, weeks, months and years we can no longer keep count. Waiting for the ubiquitous symptoms to pass, hoping those symptoms will pass, yet knowing, in our hearts it is unlikely.

We go on. Of course we go on – we have no choice. Finding ways to keep going, adapting, adjusting – gleaning what pleasure we can.

Drifting through the world – invisible- living a ghostly half life – mere shadows of the people we once were. Our full, energy rich lives a distant memory.

I know you cannot give me energy, or bring a cure. You cannot stop the pain or blow the fog from my mind so my thoughts are clear again. And yet you can make a difference. You can take the time to look at me….. I mean really look at me and see beyond the body standing in front of you, going about her business: functioning. Look closer. Lean in.

you cannot give me energy, or bring a cure… and yet you can make a difference

See the tired eyes, the droopy shoulders and the shuffling feet. See the times I hold onto something to prevent myself from falling over, see the involuntary yawns and grimaces, the shaking muscles spasming uncontrollably….

See the slightly robotic gait or delay when I try to stand. See my lungs struggling to give me enough air to breathe freely. See how often I vigorously yet fruitlessly rub at my glasses trying to remove imaginary smudges, then realise it’s my poor tired eyes that prevent me from seeing the world in all its wonderful clarity.

Look……Look….. and see me – the exhausted, confused and frightened soul trapped in a failing and unpredictable body and mind. See what ME has stolen from me.

Look……Look….. and see me

If you can see all of this and can still bear to keep looking then you may also be wise enough to see deeper still. If you have compassion in your heart then you will see that there is still a glimmer – a small spark of life and hope.

But when you tell me I look well I feel silenced, shut down. My suffering invisible, unimportant, unacknowledged, insignificant. To acknowledge my suffering is to acknowledge me. My illness does not define me, but it is part of me, part of my every day.

To acknowledge my suffering is to acknowledge me

To tell me I look well you remove my voice. I can no longer express who I am. So next time you tell me I look well, I know you do not know me, you have not really looked – you have cast the most fleeting of glances in my direction and moved on in your world of wellness.

Every minute of every day is a challenge. But the essence of being determined is to keep fighting – determined to dig deep and somehow find the strength to get out of bed, to push through the extreme fatigue, the confusion and the pain to make the best of what each day has to offer: to hold down a job; to spend time with family and friends; to contribute to the world in whatever way I can – no matter how small and seemingly insignificant that contribution may appear. To me it is a triumph – a triumph of spirit. Each moment a mini victory.

If you see this, if you really see me, then I thank you. I thank you for pausing, for noticing, for caring and for helping to make the invisible visible.

I thank you for… helping to make the invisible visible

So next time you have a headache or feel tired, or are simply feeling unwell, celebrate its transience and think of all those trapped souls…… think of ME.

A brief screening scale for ME/CFS

Health professionals often use questionnaires to determine if a person has a particular illness. Prof Leonard Jason’s DePaul Symptom Questionnaire has 54 questions and takes much time and energy to get a full picture of a person’s experience of ME/CFS.

Jason and his team have now developed a short questionnaire with 4 key symptoms to screen for ME/CFS in line with the US IOM criteria. This accurately identified people with ME/CFS from healthy controls, but had more difficulty differentiating ME/CFS from other chronic illnesses like MS, Long COVID and PPS.

The team conclude that the DePaul Symptom Questionnaire-Brief (DSQ-Brief) is useful as a first step, but the longer questionnaire may be needed to reliably confirm ME/CFS.

Developing and validating a brief screening scale for ME/CFS, by Leonard A Jason, Sage Benner, Jacob Furst & Paul Cathey, in Fatigue: Biomedicine, Health & Behavior, 07 Sep 2023 [doi.org/10.1080/21641846.2023.2252613]

Research abstract:

Objective:
The purpose of the current study was to develop and evaluate a brief screening instrument for ME/CFS. The current study identified 4 symptom items that identify those positive for the IOM ME/CFS case definition.

Study Design:
A data set of over 2,000 patients with Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and over 350 controls were assessed for the 4-item DePaul Symptom Questionnaire-Brief (DSQ-Brief). All respondents also completed the longer 54-item DePaul Symptom Questionnaire (DSQ-1) as well as the 14-item DePaul Symptom Questionnaire-Short Form (DSQ-SF).

These data sets were collected from multiple countries. We also examined the DSQ-Brief, DSQ-1, and DSQ-SF with other chronic illness groups [Multiple Sclerosis (MS) and Post-Polio Syndrome (PPS)] and those with Long COVID. Random Forest comparisons were employed in these analyses.

Results:
When contrasting ME/CFS from controls, high levels of accuracy occurred using the DSQ-1, DSQ-SF, and DSQ-Brief. High accuracy again occurred for differentiating those with ME/CFS from MS, PPS, and Long COVID using the DSQ-1 and DSQ-SF, but accuracy was less for the DSQ-Brief.

Conclusions:
The DSQ-Brief had high sensitivity, meaning it could identify those with ME/CFS versus controls, whereas accuracy dropped with other chronic illnesses. However, it was possible to achieve better accuracy and identify those cases where misidentification occurred by administering the DSQ-SF or DSQ-1 following the DSQ-Brief. It is now possible to screen individuals for ME/CFS using the DSQ-Brief and in so doing, identify those who are most likely to have ME/CFS.

Image by Peggy und Marco Lachmann-Anke from Pixabay