Monday, 19 August 2019

Very Severe ME: It’s Time for Something New!

https://www.meassociation.org.uk/2019/08/very-severe-me-its-time-for-something-new-by-greg-crowhurst-16-august-2019/ 

Guest blog by Greg Crowhurst – on  the ME Association website

This is the first of a series of blogs looking at pertinent issues regarding Very Severe ME and builds on Greg’s own experiences caring for his wife, Linda. It follows his recent contribution to Severe ME week.

I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years. The personal cost to us both because of M.E. has been enormous.

Communication is broken on every level. As soon as she has spoken, she forgets what she has said.

If I speak or ask a question it can cause unimaginable confusion and head-pain, shaking spasms, and deterioration.

Thoughts and memories are mostly beyond access. I must represent her and speak for her whenever the need arises.

Literally everything hurts her and risks deterioration to partial or total paralysis. One wrong movement or noise and the whole day is ruined before it has begun. People simply do not understand.

Who can possibly imagine living in such an assaulting and broken world for decades, without adequate investigation, care or support?

* We receive no support from the Church or local community
* We have had been forced to live below the poverty line
* Society has lost out on our professional skills (I am an award-winning Nurse, my wife is a qualified Social Worker, Counsellor and Teacher)
* We live in almost complete isolation, as my wife’s agony and hypersensitivities are so intense, that she cannot bear contact or interaction
* We have not been able to have children of our own
* I was in my 30’s when my wife became ill, shortly after we got married, I am now in my 60’s
* We were both highly respected professionals, but I have openly been called a “waste of space” as a carer
* My wife’s profound suffering goes unrecognised and ignored as if she does not exist
* Nieces and nephews have grown into adulthood, married, had children who we do not know and who do not know us
* Parents have got old and people have gotten sick without being able to visit them even when dying or to attend their funerals

We live in a hamlet, four miles from what is regularly voted the best beach in England. My wife has never even seen it, let alone put her feet in the endless sand, felt the sea splash over her toes, heard the pines whisper above the dunes.

Every aspect of care, including how and when I move, how and when I act, how and when I speak, not just in the room – for it still has impact in any part of the house – needs to be carefully thought through and brought into my awareness.

We can never do the things other people take for granted, like:

* go on holiday
* out for a meal
* a coffee at a cafe
* a show
* a concert
* a film
* to see a band
* for a walk together with the dog
* cycle
* shop
* sail
* swim
* play games, like badminton, tennis, or volleyball
* walk hand in hand
* entertain friends
* have dinner parties
* go to church, although our faith is immensely important to us

I have had to learn to take a Moment by Moment approach, to ensure the need is met in the right moment in the right way.

This is much harder than it sounds and needs the right attitude, a person-centred, partnership approach, understanding and focus.

My wife cannot:

* read a book, play guitar, study or, learn
* listen to the radio
* follow conversation or engage in normal two-way conversation
* have anyone in the house due to perfume, noise and movement sensitivity
* tolerate virtually any contact at all
* have anyone making noise in the room with her
* bear even the simplest thing like having a cuddle or holding hands
* find rest ever, for rest increases her physical suffering

Our days are spent, without exception, struggling to cope from moment to moment in the most awful suffering anyone could imagine; except you couldn’t possibly imagine just how bad it is.

People I have known, dying of cancer, have still enjoyed a better quality of life than my wife. I simply cannot bear the thought of anyone else with M.E.:

* having to endure the agony, the mistreatment, the abuse of power, the misrepresentation, the incompetence, the ignorance, the denial, the lack of accountability, the not being able to access safe, aware, medical advice or tests that would help show up the physiological dysfunction, the physical harm, the ongoing suffering that has no end in sight, down all these many years.
*having to cope, as we have, somehow, from the devastating consequences of wrong treatment that caused an irreversible deterioration.
* having to fight, as we have, every step of the way against the Establishment’s entrenched psychosocial mind set.

It is surely time for a quantum-leap change in attitude towards identifying, investigating, testing, diagnosing and supporting people with M.E.

It is surely time to stop using the label M.E. to mean anything other than the specific disease Myalgic Encephalomyelitis, classified by the WHO as a neurological disease and with multi-system dysfunction.

It is time to stop the misuse of the name Myalgic Encephalomyelitis to mean an umbrella term, incorporating a wide range of unidentified conditions and illnesses including mental health conditions and/or those either referred to as idiopathic chronic fatigue or medically unexplained symptoms (MUS).

It is vital that those who are most ill – especially the estimated 2% of M.E. patients diagnosed with Very Severe M.E. – are recognised, kept safe from wrong treatment and misinterpretation, protected from further deterioration or needless suffering, and cared for in the most appropriate way.

It is surely time for the creation of an appropriate medical pathway that honours the person and their disease. We need something new!

Saturday, 17 August 2019

This Sickness Is Not Unto Death

http://bible.christiansunite.com/Morning_and_Evening/chme0817.shtml

C H Spurgeon's Evening Devotional for 17th August

“This sickness is not unto death.”

John 11:4

From our Lord's words we learn that there is a limit to sickness. Here is an "unto" within which its ultimate end is restrained, and beyond which it cannot go. Lazarus might pass through death, but death was not to be the ultimatum of his sickness. In all sickness, the Lord saith to the waves of pain, "Hitherto shall ye go, but no further." His fixed purpose is not the destruction, but the instruction of His people. Wisdom hangs up the thermometer at the furnace mouth, and regulates the heat.

1. The limit is encouragingly comprehensive. The God of providence has limited the time, manner, intensity, repetition, and effects of all our sicknesses; each throb is decreed, each sleepless hour predestinated, each relapse ordained, each depression of spirit foreknown, and each sanctifying result eternally purposed. Nothing great or small escapes the ordaining hand of Him who numbers the hairs of our head.

2. This limit is wisely adjusted to our strength, to the end designed, and to the grace apportioned. Affliction comes not at haphazard-the weight of every stroke of the rod is accurately measured. He who made no mistakes in balancing the clouds and meting out the heavens, commits no errors in measuring out the ingredients which compose the medicine of souls. We cannot suffer too much nor be relieved too late.

3. The limit is tenderly appointed. The knife of the heavenly Surgeon never cuts deeper than is absolutely necessary. "He doth not afflict willingly, nor grieve the children of men." A mother's heart cries, "Spare my child"; but no mother is more compassionate than our gracious God. When we consider how hard-mouthed we are, it is a wonder that we are not driven with a sharper bit. The thought is full of consolation, that He who has fixed the bounds of our habitation, has also fixed the bounds of our tribulation.

Tuesday, 6 August 2019

Two new videos about the PACE Trial

The PACE trial - Part 1: Moving the goalposts


The PACE trial - Part 2: Harm



Apparently there are more videos in the pipeline – you can look out 
for them on the YouTube playlist by clicking here.

Thursday, 1 August 2019

The IDO Metabolic Trap

https://www.omf.ngo/2019/07/26/the-ido-metabolic-trap/

From the Open Medicine Foundation website – 

By Christopher Armstrong, PhD

Dr. Robert Phair has recently published a paper detailing his “metabolic trap” hypothesis underlying ME/CFS, a theory that combines engineering and physiology put together by a man adept in both fields. Dr. Phair is co-founder and Chief Science Officer of Integrative Bioinformatics, Inc, a small company built around a unique software capable of modeling human biochemistry and theories of disease. Development of this theory was funded by Open Medicine Foundation (OMF). The paper, published in the open access journal, Diagnostics, is co-authored by Alex Kashi and Dr. Ron Davis, OMF Scientific Advisory Board Director and Director of the Stanford Genome Technology Center (SGTC).

Interestingly, understanding the theory of the “metabolic trap” opens the eyes to some unique elements of ME/CFS.

Like most chronic diseases, ME/CFS can be triggered by various factors and can run in families indicating a genetic element. Unlike other chronic diseases, ME/CFS can occur in outbreaks or epidemics. For outbreaks to exist, the genetic element of ME/CFS must be common enough for a large proportion of exposed people to get the disease. This thought process led Dr. Phair to look for damaging genetic mutations that were common in the broader population but present in 100% of ME/CFS patients. A search of public genome databases including the OMF-funded ME/CFS Severely ill Big Data Study led to IDO2. The IDO2 gene stood out because it has four common damaging mutations, and every ME/CFS patient in the Severely ill Big Data Study has at least one of them.

This story isn’t solely about IDO2 though, it’s also about its brother, IDO1. The IDO1 and IDO2 genes are named so similarly because they each encode for enzymes that transform an essential amino acid (tryptophan) into an important regulator of the immune system (kynurenine). The main difference is that when tryptophan is at high levels in a cell, the IDO2 enzyme increases its production of kynurenine while, surprisingly, the IDO1 enzyme decreases its production of kynurenine. If you have a problem with IDO2 (mutations in the gene) then you must rely solely on IDO1 to produce kynurenine from tryptophan. If for any reason the tryptophan levels in a cell rise too high, then IDO1 will stop making kynurenine and tryptophan levels will remain high. This is the IDO metabolic trap.

When we think of ME/CFS we often break the disease down into predisposing, triggering and maintaining factors. In this case, the predisposing factors are the damaging mutations in IDO2, the triggering factor is an elevation in tryptophan and the maintaining mechanism is that the IDO1 enzyme can’t convert tryptophan to kynurenine when tryptophan is high, therefore maintaining a high level of tryptophan and the low level of kynurenine in the cell.  Mutations in IDO2 are common in the human population but it is unlikely that many would get ME/CFS. This is because the triggering is unlikely. Apparently, it is difficult to increase tryptophan enough to trigger the trap. That trigger likely requires an overlay of many factors, including pathogens, stressors and the environment.

This paper is avowedly theoretical; it elucidates the biochemical and mathematical foundations of the “IDO metabolic trap” as well as the experimental tests required to test the theory. Currently, these experimental tests are funded by OMF and ongoing at Stanford University in collaboration with Dr. Davis and his colleagues at the SGTC.

Read the full paper The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS.

Wednesday, 24 July 2019

14th IiME Conference Presentations Now Online

http://www.investinme.org/IIMEC14.shtml

The 14th Invest in ME Research International ME Conference 2019 - IIMEC14 - took place on 31st May 2019 in London and attracted delegates from twenty different countries - from Europe, North America and Australasia.

The conference day was preceded by the 9th Invest in ME Research International Biomedical Research into ME Colloquium - a two day closed researchers' meeting with almost 100 eminent researchers invited to attend from fourteen countries - and the full day Thinking the Future - Young/ECR Conference for young and early career investigators.

All the talks from the conference are now available to watch on the IiME Research website by clicking here or on their YouTube channel here.

14th IiME Conference Report from Dr Rosamund Vallings (Auckland, New Zealand) can be found by clicking here.

Saturday, 20 July 2019

The earnest of our inheritance


C H Spurgeon's Morning Devotional for 20th July

"The earnest of our inheritance."

Ephesians 1:14

Oh! what enlightenment, what joys, what consolation, what delight of heart is experienced by that man who has learned to feed on Jesus, and on Jesus alone. Yet the realization which we have of Christ's preciousness is, in this life, imperfect at the best. As an old writer says, "'Tis but a taste!" We have tasted "that the Lord is gracious," but we do not yet know how good and gracious He is, although what we know of His sweetness makes us long for more. We have enjoyed the firstfruits of the Spirit, and they have set us hungering and thirsting for the fulness of the heavenly vintage. We groan within ourselves, waiting for the adoption. Here we are like Israel in the wilderness, who had but one cluster from Eshcol, there we shall be in the vineyard. Here we see the manna falling small, like coriander seed, but there shall we eat the bread of heaven and the old corn of the kingdom. We are but beginners now in spiritual education; for although we have learned the first letters of the alphabet, we cannot read words yet, much less can we put sentences together; but as one says, "He that has been in heaven but five minutes, knows more than the general assembly of divines on earth." We have many ungratified desires at present, but soon every wish shall be satisfied; and all our powers shall find the sweetest employment in that eternal world of joy. O Christian, antedate heaven for a few years. Within a very little time thou shalt be rid of all thy trials and thy troubles. Thine eyes now suffused with tears shall weep no longer. Thou shalt gaze in ineffable rapture upon the splendour of Him who sits upon the throne. Nay, more, upon His throne shalt thou sit. The triumph of His glory shall be shared by thee; His crown, His joy, His paradise, these shall be thine, and thou shalt be co-heir with Him who is the heir of all things.

Saturday, 13 July 2019

How Can I Help Someone With Severe M.E.?

https://25megroup.org/wp-content/uploads/2019/05/How-to-Help-Someone-with-Severe-Myalgic-Encephalomyelitis-3.doc

From The 25% M.E. Group

• Most importantly, people with M.E. need to be believed and respected. Simple as that! If you have read our leaflet “8th August Severe Myalgic Encephalomyelitis Understanding and Remembrance Day” you know how serious M.E. can be. It is an awful illness – show your friend/relative that you know that.

• Even severe illness may not be instantly apparent – for example your friend/relative may be able to walk to the toilet, yet be too ill to go out in a wheelchair, watch TV or even sit up in bed for more than a few minutes. They may spend most of their energy on something as basic as eating. They may look remarkably well for half an hour or an hour, but then spend the rest of the day in pain in a darkened room.

• Flare up of symptoms after activity or stimuli is a key feature of the illness. The activity may be tiny by healthy standards and stimuli things you probably don't even notice (such as light, movement, or background noise). Here are a few ways to help: shut doors (to reduce noise), use headphones if watching TV nearby, be aware that talking uses energy – ask your friend/relative how long the conversation needs to be and try to stick to that. If they seem particularly energetic, ironically this may be a sign that they are doing too much (and running on adrenaline!) - ask if they need a rest.

• Severe Myalgic Encephalomyelitis is very isolating. People with this illness are too ill to work or go to school, and most miss out on all social events and family gatherings. They may be too ill to communicate with friends and family, or to see their doctor (even at home), and they may feel very misunderstood. You can help ease the isolation by including your friend/relative as far as their illness will allow. For example you could take a few pictures of changes in the neighbourhood, video a special event (if they are well enough for TV), send a card, or ask if they want anything when you go to the shop.

• Your friend/relative may be too ill to use the phone, or to receive visits. This doesn't mean they don't want contact. You can still send postcards, or where suitable keep in touch with a carer. Many people with M.E. can manage texts more easily than conversations, so this may be a possibility.

• Watch the excellent film Voices from the Shadows. Some scenes may be distressing, so watch with care, especially if you have M.E. yourself.  
http://voicesfromtheshadowsfilm.co.uk/

• The 25% group can arrange for information to be sent to any health care or social services professional either directly or through the enquirer – please ask if this might be helpful. We also have an advocacy service for anyone who is struggling with the benefits system.

• Research demonstrates an abnormal response to exercise in Myalgic Encephalomyelitis, and the illness can become more severe through attempting to 'push through' the symptoms. Patients need to pace small activities (whether physical or mental) with regular rests. This is extremely challenging, and takes a lot of self-control, as patients want to be getting on with their lives. You can help by being aware of the temptation to do too much, by asking your friend/relative whether they need a rest.

8th August is a day to remember those who have lost their lives to this illness, and those living with it. Please talk to your friends about Myalgic Encephalomyelitis to help spread awareness, post something on Facebook, and maybe share a link to www.25megroup.org  Spend some time reading our website, to inform yourself about the illness.

Donate! The 25% ME Group represents those who are severely affected by this illness, and we will make good use of any donations. You can send a cheque to the address below, or donate online via the donate button on the website.

Thank you for reading this leaflet and for caring about your friend/relative. If you have any more questions or concerns, please do contact us by email at: 
enquiry@25megroup.org

SEVERE MYALGIC ENCEPHALOMYELITIS
UNDERSTANDING & REMEMBRANCE DAY
8th August

25% M.E. Group
21 Church Street,
TROON,  Ayrshire   KA10 6HT
Tel:  01292 318611
Advocacy Helpline:  0141 570 2938

See our WebPages on:  www.25megroup.org

Charity No: SC034265

PATRON: Dr Byron M Hyde MD
MEDICAL ADVISOR: Dr N Speight MA, MB, B Chir, FRCP, FRCPCH, DCH
SCIENTIFIC ADVISORS: Dr Vance Spence PhD
Prof M Hooper PhD. B.Pharm. C.Chem. MRIC

Friday, 5 July 2019

Why Graded Exercise Therapy and Cognitive Behaviour Therapy are Controversial in Chronic Fatigue Syndrome

https://blogs.bmj.com/medical-humanities/2019/07/04/why-graded-exercise-therapy-and-cognitive-behaviour-therapy-are-controversial-in-chronic-fatigue-syndrome/

Commentary by Michiel Tack

Sharpe and Greco ask the interesting question of why cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are controversial in the field of chronic fatigue syndrome (CFS).

One reason is that the type of CBT prescribed for patients with CFS differs from the CBT used in other illnesses. CBT in CFS assumes that patients’ medical condition is reversible through cognitive and behavioral changes. In some trials, participants were encouraged to no longer see themselves as CFS patients.1 If persons suffering from cancer or multiple sclerosis were told that CBT could reverse their illness, one might assume this treatment would be controversial as well.

A second reason is that CFS is considered to be an “exertion intolerance disease”.2 The most characteristic symptom of CFS patients is not fatigue but post-exertional malaise. This means that patients suffer a relapse when they exceed their activity limit. If CFS patients try to push through and do more, they report getting worse.3 This is however what treatments such as GET and CBT aim to provoke. Patients are instructed to increase their activity level time-contingently and to no longer respond to an increase of symptoms by resting. Most of the randomized trials have not adequately addressed the possible harms of GET and CBT but in multiple surveys, patients report to have been harmed by this approach.4

A third reason is that both GET and CBT label characteristic CFS symptoms as unhelpful cognitive responses.5 When CFS patients, for example, report that physical activity makes their symptoms worse, this is seen as maladaptive avoidance behavior rather than a feature of the illness. When patients think their illness is awful and feel overwhelmed by it, this is labeled as ‘catastrophizing’, even though CFS patients have been found to be more functionally impaired than those with other disabling illnesses. And when CFS patients suspect they are suffering from a yet unknown biological illness, this is described as an unhelpful somatic attribution. With GET and CBT, CFS patients are encouraged to view their symptoms as the result of stress, anxiety or deconditioning, even though scientific evidence for such hypotheses is absent.

A fourth reason why GET and CBT are controversial is that, despite being frequently prescribed, these treatments are not effective in patients with CFS. Randomized trials demonstrate that objective outcomes such as work resumption, disability payments, actigraphy, exercise testing, and neurocognitive functioning do not improve after GET or CBT.6 Studies show moderate improvements on subjective outcomes such as fatigue questionnaires, but at long-term follow-up, there are often no longer significant differences in outcome between patients who received GET or CBT and those who did not.7 Critics claim that researchers have wrongly focused on the short-term improvements on subjective outcomes to assess the effectiveness of GET and CBT. They argue that because of a lack of blinding and an adequate control condition, these trials should focus on objective outcomes as these are less prone to biases.8 To resolve the controversy of GET and CBT further scrutiny of these trials is needed.

[1] Bazelmans E, Prins J, Bleijenberg G. Cognitive Behavior Therapy for Relatively Active and for Passive Chronic Fatigue Syndrome Patients. Cogn Behav Pract. 2006;13(2):157-166.

[2] Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, The National Academies Press, Washington, D.C., 2015.

[3] Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, The National Academies Press, Washington, D.C., 2015.

[4] Kindlon, T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111. Available at: https://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx

[5] Tack M. The risk of labelling CFS symptoms as unhelpful cognitive responses. Clin Child Psychol Psychiatry. 2019. https://doi.org/10.1177/1359104519853849

[6] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

[7] Sharpe M, Goldsmith KA, Johnson AL, Chalder T, Walker J, White PD. Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial. Lancet Psychiatry. 2015 Dec;2(12):1067-74.

[8] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

Monday, 1 July 2019

Meeting with Minister raised important concerns about welfare benefits for people with ME


From the ME Association website – 

By Dr Charles Shepherd, Hon. Medical Adviser, and Ann Innes, Welfare Rights Adviser, ME Association.

This report follows a meeting at the House of Commons on Tuesday 18th June 2019 with Justin Tomlinson MP, Minister of State for Disabled People, Health and Work to discuss problems faced by people with ME/CFS when claiming Employment and Support Allowance (ESA) and Personal Independent Payment (PIP).

Present:

Justin Tomlinson MP, Minister of State for Disabled People, Health and Work, The Countess of Mar, Chair Forward ME, Carol Monaghan MP Glasgow North-West, Katherine Ladd, Researcher for Carol Monaghan, Dr Charles Shepherd, Hon. Medical Adviser, ME Association, Ann Innes, Welfare Rights Adviser, ME Association. A small team of civil servants who are responsible for the administration of ESA and PIP were also present at the meeting.

Background 

This meeting was arranged to take forward points and concerns about DWP benefits that were raised during the House of Commons debate on ME/CFS that took place in January 2019 and was led by Carol Monaghan MP.

As part of the information gathering process for the meeting people were asked on social media to contact either Carol Monaghan or the ME Association with problems they are facing with claims for ESA or PIP. Over 500 emails and social media comments were received. Key points were then summarised by the ME Association and by Katherine Ladd, Carol Monaghan’s research assistant, for use at the meeting.

Thank you to everyone who responded to this request for information. And to Carol Monaghan MP for securing this meeting, and to the Countess of Mar for all her continuing work in the House of Lords on DWP benefit issues as they affect people with ME/CFS.

As previously noted, there was not enough time to raise the often-complex individual problems that people are faced with when applying for welfare benefits. However, we did manage to cover a lot of ground during the meeting – which went on for longer than expected.

We also quoted from the section on Prognosis in the Chief Medical Officer’s (2002) report on ME/CFS and from Professor Malcolm Harrington’s first (2010) Independent Review of the Work Capability Assessment.

General information on ME/CFS in relation to DWP benefit applications

During the meeting we emphasised several important points relating to the symptoms and resulting disability that occurs in ME/CFS, many of which are not being taken into account during medical assessments for ESA and PIP. In particular:

1. The core symptoms of ME/CFS – activity-induced muscle fatigue and pain, cognitive dysfunction/brain fog, the inability to sustain physical and mental activity, and the resulting post-exertional malaise/symptom exacerbation if people go beyond their physical and cognitive limitations. The latter being important because claimants should only be able to carry out descriptor tasks if they do not suffer significant after effects.

2. The way in which ME/CFS symptoms often fluctuate throughout the day and from day to day – so ‘snapshot’ conclusions as to what someone can do once, or on a good day, are both inappropriate and inaccurate.

3. Many of the descriptors used in medical assessments for ESA and PIP do not measure or reflect the impact that the core symptoms of ME/CFS have on a person’s capacity to carry out meaningful employment.

4. The need to ensure that people are asked by the medical assessors if they can carry out descriptor tasks reliably, repeatedly, safely and in a timely manner.  If they cannot do so they cannot be scored as being able to do so

5. Case law states that if someone cannot carry out a descriptor task for a significant period (i.e. more than an hour) within a day they should be considered as being unable to do that descriptor task for the entire day.  

Specific points that were raised during the meeting

We were able to raise specific issues covering the whole claimant journey from completing an application to going through reconsiderations and challenging a DWP decision through an appeal:

1. People with cognitive dysfunction often require help and extra time to fill in the long and complex paperwork when applying for ESA (i.e. the ESA50 form) and PIP. We asked for a two-week extension period on request to the original return deadline limit for the ESA50 – in the same way that this applies for PIP. The DWP agreed to consider this relatively straightforward request. However, this is something that would have to be requested by the claimant, if the DWP do decide to adopt our suggestion. The DWP pointed out that it should be possible to arrange a home visit from one of their staff to help to fill in forms such as the PIP and ESA medical questionnaires if a request is made.

2. People should be able to have a medical assessment at home if this is supported by their GP. Just because someone may be able to cope with a visit to a nearby GP surgery does not mean that they can cope with travel to and from a medical assessment centre for a detailed interview and physical examination that could last for up to two hours. More use of paper-based assessments should be made in cases where a GP can confirm that the person is severely affected and housebound as a result. We were asked to submit any cases where home visits or paper-based assessments are refused without good cause. 

3. It was pointed out that the medical assessors have a duty to make reasonable adjustments in assessment procedures (i.e. arranging a home assessment or terminating an interview/assessment when the person was clearly unwell or not able to properly answer questions). Failure to do so could be a contravention of the Equality Act.

4. Assessment centres must be suitable and accessible for people with mobility problems and/or are having to travel a long distance.

5. People with ME/CFS are often under no regular medical supervision – so it can be very difficult, or even impossible, to obtain supportive medical information in the time required.

6. People should not have to pay a GP to provide supportive medical evidence – evidence collected for the meeting indicates that this is quite common, and the charge can be up to £40. Medical evidence is also often ignored, and the decision is based solely on the assessment report. In evidence collected for the meeting, it was clear that some reports bore little resemblance to what the person had said during the assessment.

7. Evidence from private healthcare professionals, other health professionals, and carers should also be considered. 

8. Some medical assessors do not have an accurate or adequate knowledge of ME/CFS. Training on symptoms, fluctuation and severity in ME/CFS is clearly required along with how this affects mobility, intellectual capacity, self-care and the ability to take on meaningful work. It was pointed out that members of the Forward ME group are involved with the preparation of professional development modules and other training initiatives.

9. Cognitive dysfunction (i.e. problems with memory, concentration, attention span, information processing) can be a very disabling aspect of ME/CFS. However, most people find that they are awarded low or no points for descriptor tasks that involve some form of assessment of cognitive function. 

10. Training on ME/CFS for DWP decision makers and members of tribunal panels was also raised. NB: Administration and training of tribunal members is the responsibility of the Ministry of Justice.

11. Medical reports still contain inaccurate or guesswork conclusions, or even dishonest information, especially for descriptor tasks that require specific information (e.g. walking distances). Note: This has also been brought to the attention of the DWP by the House of Commons Committee on Work and Pensions.

12. All claimants should be able to have their medical assessment audio recorded and facilities for doing so should be readily available – which is not the case at present.

13. Re-assessments, which form part of the on-going review process, should be reduced in frequency where a person can supply medical evidence to show that their condition has stabilised for a period of years and that all appropriate approaches to management have been tried. Information on 5-year prognosis in ME/CFS from the CMO report was referred to here.

14. Some people with ME/CFS are now having to wait for a long period of time (in some cases over six months) between making an appeal and the appeal being heard. 

15. The whole procedure can be very stressful, especially when a decision is being challenged. As a result, some people just give up trying to obtain a benefit that they should be entitled to.

Conclusion

Both sides agreed that this had been constructive and useful meeting. The points we made were listened to very carefully and we felt that the Minister had been well briefed and was genuinely interested and concerned by what we had to say.  

The DWP ministerial group requested that we forward any cases to them with names and national insurance numbers where the law around being able to carry out a descriptor “reliably” was not being properly considered.  

A further meeting, this time involving representatives from the three organisations – Atos, Capita and Maximus – that carry out medical assessments for the DWP is now being arranged.

More information:

1. The House of Commons debate: Appropriate ME Treatment – January 2019

2. Pro forma PIP letter (see opposite) that has been designed by Ann Innes (Welfare Rights Adviser, ME Association). This can be used as an aid by health professionals to provide supportive medical evidence for applications.

3. ME Association Guides and Leaflets relating to Welfare Benefits incl. how to apply for Universal Credit (UC) and Personal Independence Payment (PIP). An updated guide to Employment Support Allowance will be published shortly.


Tribunal service stats on appeal rate success

Claimants are winning PIP and ESA appeals at the highest rate ever recorded, according to the latest Tribunals Service statistics. Overall, 70% of social security appeals are successful, with the claimant getting a better award than they originally received from the DWP. The success rates for benefits include:

ESA 74%
PIP 73%
DLA 66%
UC 58%

The success rate for PIP is up 4% on a year ago, whilst the success rate for ESA has risen 5%.

The number of appeals is down, however. ESA appeals are down by 42% compared to a year ago, although much of this is due to the introduction of universal credit.

PIP appeals are also down, this time by 14% compared to a year ago. This may, in part, be due to a slowdown in the transfer of claimants from DLA to PIP.

Overall, social security and child support appeals are down 19% on a year ago.

The time it takes for appeals to be dealt with is rising, however, is spite of a diminishing caseload. The mean length of time for a case to be dealt with has risen to 30 weeks, up from 24 weeks a year ago.


Additional comment from Dr Charles Shepherd: 

This high success rate on appeal for both ESA and PIP benefits indicates that it is well worth appealing against an unfavourable DWP decision if you believe you have a good case.

The success rate on appeal can be significantly improved by providing up to date and supportive medical attendance that is relevant to the claim and attending the tribunal in person. 

Please seek advice from a welfare rights adviser to assess the strength of your case as your whole award is looked at again at the tribunal, not just the bits you disagree with.  

So, if your evidence/case isn’t strong enough there is a risk to your existing award.  If you have not been given an award, however, it is certainly worth appealing.

Monday, 24 June 2019

The Loneliness of the M.E. Monster

https://www.jaytay.co.uk/2019/06/20/dear-bug-the-loneliness-of-the-m-e-monster/

June 20, 2019

by Jessica Taylor-Bearman (author of “A Girl Behind Dark Glasses” - click here).

It is National Loneliness Week and I want to talk about how loneliness has affected me within my M.E. journey. When I first became chronically unwell, my life changed dramatically. I had been a very sociable 14-year-old, who enjoyed school and being with my friends. The truth was, I didn’t have that energy to spare anymore. At the beginning, I didn’t have the mental or physical energy to spare to socialise and it was something that I missed greatly.

After a few months, my friends would see me less because they didn’t know when I was well enough for a visit, and I happened to live in a little village away from the school, so I missed out. It is amazing how a house can be full of people (I was in a family of five), yet still feel like you are totally alone. No one could really understand what I was going through, and this just added to the frustration and loneliness that I felt being so ill.

I moved to hospital at the end of 2006, and that was insufferable. My family stayed with me at first and became my advocates, and social stimulation. However, after a few months, they were not allowed to come to the hospital for more than ten minutes a day. This was when my loneliness hit its lowest. I craved communication, but the nurses didn’t really have the time to try and work out what I was trying to say and didn’t know how to listen to me. My family were chaperoned when they were with me, so I didn’t get to spend any quality time with them. My mood dropped. I stayed positive because I had to keep telling myself that it would get better, but I started to dream the day repeatedly. I didn’t know when I was in reality and when I was dreaming. It was miserable.

This was before the days of social media. We had a little bit in the form of MSN Messenger but there was no Facebook, Instagram or twitter to connect to more people suffering with M.E. or any other chronic health disease. I didn’t know any other people suffering from ill health, let alone chronic health. It was a completely new to me. Social media can be both a blessing and a curse. I would have loved it to be around at the beginning because I don’t think I would have felt quite as alone but also to see what all my friends were up to would have been quite upsetting because I couldn’t join in.

In the time that I was completely missing, I felt like my friends and family didn’t really know how to deal with me. I was unable to communicate and this was problematic. I watched as they all grew up, and I didn’t join them. It was incredibly hard to watch the changes and not be able to do anything about it. The world of one room became my safe haven. I knew what was going on in that room, it had become my whole world. I didn’t see anything outside these four walls. How could it be so lonely inside it?

When I started to re enter the big wide world and started to be able to see my friends a bit more, it made me realise quite how much I had missed. I had lost out on so much and it was incredibly painful. Friends were now at university, I hadn’t even got passed my GCSES at school. I was stuck in a time warp. I challenge anyone to not feel lonely when you realise what is lost or you can’t find your tribe of people who get you. This is where all the social media outlets became incredibly useful to explain my life to someone else. I felt like I could connect with people for as little or as long as I was able to. I started to learn what my identity was. For years, I think that the M.E. Monster was my identity. It had taken over every aspect of my life, I had nothing else. I have started to improve further, I think I struggle more to know who I can connect with. People don’t expect me to still be suffering from loneliness but it is still there, just in different aspects of my life. Connecting with other people who suffer from this is very helpful, but it doesn’t really solve the problem. If I could say one thing to a person who doesn’t suffer with ill health, it would be: don’t forget those who go a little quiet on you.

They are probably struggling in more ways than one and need people to rally around them.

Be kind.

Thursday, 20 June 2019

The 14th Invest in ME Research International ME Conference 2019

https://www.efna.net/14th-invest-in-me-research-international-me-conference-2019-takes-place-in-london/

From the European Federation of Neurological Associations (EFNA) website – 

The 14th Invest in ME Research International ME Conference 2019 – IIMEC14 – took place on 31st May 2019 in London and attracted delegates from twenty different countries – from Europe, North America and Australasia.

The conference day was preceded by the 9th Invest in ME Research International Biomedical Research into ME Colloquium – a two day closed researchers’ meeting with almost 100 eminent researchers invited to attend from fourteen countries – and the full day Thinking the Future – Young/ECR Conference for young and early career investigators.

These three days prior to the IIMEC14 conference brought together researchers (both new to ME and experienced ME researchers) to collaborate and share knowledge for the benefit of future research into this disease by enhancing education and effectiveness of research efforts. The need for funding of biomedical research was underlined as the theme of ME Conference Week 2019 – #InvestinMEresearch

The IIMEC14 conference showed the major initiatives and research taking place, continuing an international collaborative strategy for biomedical research which Invest in ME Research has been championing for over fourteen years.

EFNA’s Executive Director, Donna Walsh, and Communication Manager, Elizabeth Cunningham, attended the conference – sharing news of EFNA’s advocacy work at European-level and on-going engagement with member organisation the European ME Alliance (EMEA).

Nancy Van Hoylandt, EFNA Board Member and EMEA representative, brought the #BrainLifeGoals campaign to the conference. Participants were delighted to share their #BrainLifeGoals and raise awareness of the issues facing the ME community.

Friday, 7 June 2019

The Safest Place

http://bible.christiansunite.com/Faiths_Checkbook/faith0607.shtml

C H Spurgeon's Cheque Book Of The Bank Of Faith Daily Devotional for 7th June

“And I give unto them eternal life; and they shall never perish, neither shall any man pluck them out of my hand.” 

John 10:28

We believe in the eternal security of the saints. First, because they are Christ's, and He will never lose the sheep which He has bought with His blood and received of His Father.

Next, because He gives them eternal life, and if it be eternal, well then, it is eternal, and there can be no end to hell, and heaven, and God. If spiritual life can die out, it is manifestly not eternal life, and that effectually shuts out the possibility of an end.

Observe, further, that the Lord expressly says, "They shall never perish." As long as words have a meaning, this secures believers from perishing. The most obstinate unbelief cannot force this meaning out of this sentence.

Then, to make the matter complete, He declares that His people are in His hand, and He defies all their enemies to pluck them out of it. Surely it is a thing impossible even for the fiend of hell. We must be safe in the grasp of an almighty Saviour. Be it ours to dismiss carnal fear as well as carnal confidence and rest peacefully in the hollow of the Redeemer's hand.

Saturday, 1 June 2019

Out of sight… Recent work looking at how to involve severely ill ME/CFS patients in research


(Taken from the Spring edition of “Breakthrough” magazine produced by ME Research UK.)

There is a considerable lack of information about those people with ME/CFS who are severely ill. They are often neglected—even though they have worse prospects of recovery—and under-represented in what little research is done.

A large part of the problem is that their challenging circumstances mean these individuals have difficulty accessing medical care and engaging in medical research. Is there any way of improving this situation?

With funding from ME Research UK, Victoria Strassheim and colleagues at Newcastle University have been conducting a programme of research concentrating on severely affected ME/CFS patients. Over the last couple of years, Victoria has published a review of existing research on severe ME, and an exploration of the effects of deconditioning in these patients. A third paper was recently published in BMJ Open, and looks specifically at how to include severely affected ME/CFS patients in research.

The first part of the project was to attempt to contact and evaluate patients with severe ME/CFS within the Northern England Clinical Network. The participants were adults with ME/CFS who were wheelchair-, house-, or bed-bound. A total of 483 questionnaire packs—including the Barthel Functional Outcome Measure and the De Paul fatigue questionnaire—were sent out to those people identified.

Unfortunately, only 63 packs were returned, although 76% to 88% of participants managed to complete the questionnaires successfully. The responses provided a host of information on the burden of symptoms and functional difficulties patients have to live with. The findings of the survey are freely available to download from the BMJ Open website: bit.ly/StrassheimSurvey.

The second part of the project involved making a series of home visits to five severely ill ME/CFS patients, and attempting to complete assessments previously conducted in people with mild or moderate ME/CFS.

Over the course of four visits, a number of activities were attempted, including various physical and respiratory tests, cognitive assessments, and several questionnaires. Two patients were able to complete all of the assessments, while the other three achieved around 50%, and were unable or refused to perform the other tests, or could not attend due to ill health.

The investigators conclude that people severely affected by ME/CFS can engage with research, but they have a considerable burden of symptoms and a poor quality of life, and they need more support during the research process. The use of “research advocates” is suggested, to help engage and recruit these individuals into clinical studies.

Monday, 20 May 2019

Low Blood Volume, ME/CFS and Slow, Chronic Sepsis

https://www.syndromea.org/2019/05/17/low-blood-volume-a-sepsis-like-syndrome-mcas/

Summary

A very common cause of sepsis is the leakage of bacteria into the blood from the gut. ME/CFS patients have signs of leakage of bacteria from the gut into the blood and our illness looks a lot like sepsis. Low blood volume and mast cell activation may have everything to do with this process.

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In a 2018 paper, Dr. Maureen Hanson’s group conducted a study on microbiota and ME/CFS patients.  The microbiota is the collection of microorganisms that live in the gut.

Hanson’s team found that a substance called LPS was significantly elevated in the blood of patients. LPS is a substance from the cell walls of certain bacteria.  LPS becomes elevated in the blood when there is an increased permeability or leakiness of the intestines.

Other researchers have had similar findings with regard to LPS and ME/CFS patients.

Dr. David Bell, a longtime ME/CFS physician and member of the Open Medicine Foundation has compared ME/CFS to a slow, chronic version of sepsis.  The commonalities between these two conditions include low blood pressure, low blood volume, a loss of energy production at the cellular level, and widespread inflammation.

LPS, from either a bacterial infection or a damaged or leaky gut, is the most common cause of sepsis, a body-wide inflammatory disorder that kills 40% of its victims. LPS is a powerful trigger of inflammation and, because it spreads through the blood, it can cause inflammation all through body.

At the most recent Open Medicine Foundation Symposium, Dr. Bell’s book on this subject was held up in front of the audience and the speaker said essentially that Dr. Bell was really on to something.

Does a chronic trickle of LPS from the gut into the bloodstream of ME/CFS patients trigger a slow, chronic sepsis? It seems obvious that it could.

What causes this slow leak, this elevated amount of LPS in the bloodstream of patients?

ME/CFS patients have consistently been found to have chronically low blood volume. The loss of blood volume is enough to apparently cause our hearts to shrink in size. In ME/CFS patients with orthostatic intolerance, the amount of blood we are missing is equivalent to stage II hemorrhagic shock.

If ME/CFS is like a slow, chronic sepsis, we might also say that it is like a slow, chronic hemorrhagic shock.

Shock entails a loss of blood delivery to tissues.  This is called a loss of perfusion and the gut is extremely sensitive to losses of perfusion, much more so than many other organs in the body. Hemorrhagic shock, the type of shock that occurs when you lose blood, readily causes the gut to become leaky and release LPS into general circulation.

Mast cells are powerfully activated by LPS and a chronic slow leak of LPS into the bloodstream could be an obvious trigger of Mast Cell Activation Syndrome (MCAS), which so many of us suffer from.

In addition, the damage caused to the gut by problems with perfusion that may be largely caused by mast cells. 

Perhaps an existing propensity towards mast cell activation provides a powerful push towards an illness that looks like ME/CFS. Many more women than men get ME/CFS and female hormones powerfully stimulate mast cells.