Tag: Action for ME

Report on the impact of Covid-19 on ME

Summary:

This summary report provides the preliminary findings from responses to the survey we are carrying out, in partnership with Action for ME, to identify the impact that Covid-19 has on people with ME. The report is based on the analysis of the 220 responses received in the three weeks after the survey went live in late March.

These initial responses show clearly that Covid-19 had a significant impact on respondents, with more than three quarters (76%) of respondents saying that Covid-19 made their ME symptoms worse. This impact appears to be long lasting, with over two thirds of respondents reporting that the worsening in symptoms has lasted more than 6 months and have still not resolved.

The wider impact of Covid-19 is illustrated by the negative impacts on the health of respondents, including 72% reporting new symptoms. The analysis also shows that respondents’ ability to attend education or work had decreased and their use of health services had increased significantly, highlighting the potential economic impact of Covid-19.

Read the full report HERE.

Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME

Abstract:

PURPOSE:First, to explore the experiences of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) of rehabilitation therapies so as to build an understanding of reasons for the discrepancy between the notably mixed experiences regarding effectiveness reported in patient surveys and the RCT evidence about the efficacy of Graded Exercise Therapy (GET). GET is a form of structured and supervised activity management that aims for gradual but progressive increases in physical activity. Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT).

METHOD: An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.

RESULTS: Both positive and negative experiences of rehabilitation were reported. Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise. Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.

CONCLUSIONS: The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline advice regarding GET, indicating that some clinical encounters were not implementing these. These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME.

Implications for Rehabilitation: The insensitive delivery of rehabilitation support for people with CFS/ME can explain negative outcomes reported in patient surveys. Therapist-patient collaboration, establishing a sustainable baseline and agreeing a setback plan are all examples of higher quality rehabilitation indicated by this research. Greater awareness of the positive and negative experiences of rehabilitation therapies should enable avoidance of the potential pitfalls identified in this research.

Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing. By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working.

Comment in:

 

Source: Gladwell PW, Pheby D, Rodriguez T, Poland F. Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Disabil Rehabil. 2014;36(5):387-94. doi: 10.3109/09638288.2013.797508. Epub 2013 Jun 4. https://www.ncbi.nlm.nih.gov/pubmed/23735013

 

Patient organisations in ME and CFS seek only understanding

Comment on: General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. [BMJ. 2004]

 

Editor—To compare general practitioners’ attitudes to patients with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) and those with irritable bowel syndrome was disappointing in the study by Raine et al.1 Particularly disappointing was that the study was conducted in the months after the chief medical officer recognised—with considerable attendant publicity—the severity and impact of chronic fatigue syndrome or myalgic encephalomyelitis on the lives of those affected.2

One outcome of the study was that pressure groups were perceived as influencing clinical encounters, making it harder to legitimise the symptoms. That the authors labelled patients’ organisations “pressure groups” was interesting in itself.

The organisations cover a range of views on the illness and the solutions needed. This organisation carries out an information role for patients and professionals and provides a range of services no different from that of any other medium sized charity (www.afme.org.uk). We campaign vigorously of course for recognition of chronic fatigue syndrome and myalgic encephalomyelitis and for funding to remedy years of neglect in this field.

We are not “antidoctor” and our members mostly view their general practitioners as supportive and understanding but faced with a complex illness and lacking a toolkit to help.

Far from patients’ organisations wishing to politicise the consulting room, we simply ask for a little more understanding, mixed with a little humility and matched with an eagerness to obtain training and information about diagnosis and treatment.

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/

 

Source: Clark C. Patient organisations in ME and CFS seek only understanding. BMJ. 2004 Jul 10;329(7457):112-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/ (Full article)

 

Chronic fatigue syndrome in children. Patient organisations are denied a voice

Comment on: Managing chronic fatigue syndrome in children. [BMJ. 1997]

 

Editor—Action for ME is one of the two patient support groups referred to in “editor’s choice” in the issue of 7 June. The organisation, which represents 8000 members, accepts that any illness can have both physical and psychological components. In fact, for the past five years it has offered psychological support in the form of professional telephone counselling, and our journal has carried numerous articles testifying to a more complex understanding than the editor implies.

What we have a problem with, however, is some medical journals’ overemphasis on psychological factors when they refer to myalgic encephalomyelitis. Provocative features about hysteria and wandering wombs have not helped.1 Because of the possibility of cognitive malfunction,2 we believe that getting better is more complex that letting go of “symptom dependency” and “therapeutic nihilism”—terms that are frequently used in research attempting to show that abnormalities are not components of a primary pathological process but are secondary to behavioural aspects of myalgic encephalomyelitis, such as reduced physical activity.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/pdf/9361554.pdf

 

Source: Jacobs G. Chronic fatigue syndrome in children. Patient organisations are denied a voice. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Shonagh Scott and colleagues’ paper on general practitioners’ attitudes to self diagnosed myalgic encephalomyelitis illustrates, if nothing else, the continuing misrepresentation of this illness and those who suffer from it.’ Contrary to the authors’ claims, Action for ME has never encouraged self diagnosis, and nor have the other “active support organisations” in Britain. Moreover, we have never advocated that patients should make unreasonable demands on their general practitioners.

Despite what Scott and colleagues imply, it is not just patients who recognise the existence of myalgic encephalomyelitis but also the World Health Organisation (the disease appears in the International Classification of Diseases (10th revision)), several handbooks, and many doctors. Indeed, positive attitudes to fatigue syndromes such as myalgic encephalomyelitis have been noted in several studies in the past few years. For instance, Ho-Yen and McNamara surveyed 178 general practitioners in Scotland and found that 71% accepted the existence of the disorder.2 In New Zealand the figure was 90%.3

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/pdf/bmj00593-0058a.pdf

 

Source: Arber M. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/