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.